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Kramer JM, Ni P, Pfeiffer B, Persch A, Guerrero Calle F, Schwartz A, Barbour E, Davies DK. Psychometric properties of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome: A cognitively accessible measure of functional performance. Dev Med Child Neurol 2025; 67:770-778. [PMID: 39497492 PMCID: PMC12049558 DOI: 10.1111/dmcn.16117] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/11/2023] [Revised: 09/02/2024] [Accepted: 09/13/2024] [Indexed: 05/06/2025]
Abstract
AIM To evaluate the structural validity, internal reliability, and measurement invariance of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome (PEDI-PRO), a measure of functional performance of discrete tasks required to participate in everyday life situations important for adulthood. METHOD This was a cross-sectional study with 306 young people aged 14 to 22 years (mean 18 years 10 months, SD 2 years 5 months) with developmental disabilities (43.1% autism spectrum disorder only, 23.9% intellectual disability, 17.6% other disability, 11.4% both autism spectrum disorder and intellectual disability, 3.9% missing) completed the PEDI-PRO. Following COnsensus-based Standards for selection of health Measurement INstruments (COSMIN) criteria, we conducted a confirmatory factor analysis, applied a Rasch rating-scale model, examined Cronbach's alpha, Rasch person reliability and separation coefficients, and differential item functioning (DIF). RESULTS Structural validity was good for the daily activities and mobility domains, and acceptable for the social/cognitive domain. The 3-point Likert response scale functioned as intended. All domains demonstrated acceptable internal consistency on all criteria. One or two items in each domain demonstrated DIF, but the impact on all domain scores was less than 1.0 threshold. INTERPRETATION The cognitively accessible design and innovative conceptual measurement framework probably contributed to these promising findings. The PEDI-PRO addresses a gap in high-quality patient-reported outcome measures that assess priority outcomes for young people with developmental disabilities.
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Affiliation(s)
- Jessica M. Kramer
- Department of Occupational Therapy, University of Florida, Gainesville, FL, USA
| | - Pengsheng Ni
- Biostatitics & Epidemiology Data Analytic Center, Boston University School of Public Health, Boston, MA, USA
| | - Beth Pfeiffer
- Department of Health and Rehabilitation Sciences, Temple University, Philadelphia, PA, USA
| | - Andrew Persch
- Department of Occupational Therapy, Colorado State University, Fort Collins, CO, USA
| | | | - Ariel Schwartz
- Institute on Disability, University of New Hampshire, Durham, NH, USA
| | - Elizabeth Barbour
- Department of Occupational Therapy, University of Florida, Gainesville, FL, USA
| | - Daniel K. Davies
- AbleLink Smart Living Technologies, LLC, Colorado Springs, CO, USA
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Kratz AL, Carlozzi NE, Murphy SL, Braley TJ, Whibley D, Williams DA, Fritz NE, Kallen M. Development of self-report measures of physical, mental, and emotional fatigability: the michigan fatigability index (MIFI). Qual Life Res 2025; 34:1735-1748. [PMID: 40050502 DOI: 10.1007/s11136-025-03934-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/19/2025] [Indexed: 05/29/2025]
Abstract
PURPOSE To develop item banks and static short-forms for a patient reported outcome measure of perceived physical, mental, and emotional fatigability-the Michigan Fatigability Index (MIFI). METHODS Building on earlier qualitative work, this study utilized cognitive interviews in samples representing the general adult population across the lifespan, people with multiple sclerosis (MS), or people with fibromyalgia (FM) to develop initial item pools. A nationwide cross-sectional survey study in MS and FM samples was used to field test items to develop item banks. RESULTS Exploratory and confirmatory factors analyses indicated single underlying dimensions for each of the MIFI subdomains, and a graded response model (GRM) supported item fit of 42, 28, and 23 items to the physical, mental, and emotional fatigability items banks, respectively. Differential item functioning was not detected for age, condition (FM vs. MS), education level, ethnicity, race, or sex. Expert review and GRM calibration data was used to inform the selection of three 6-item short forms that assess physical, mental, and emotional fatigability and to program associated computer adaptive tests. CONCLUSION The MIFI shows initial evidence of good psychometric properties. Users can administer the MIFI as a static short form and efforts are underway to provide access to the measure as a computer adaptive test. T-Score scale conversion allows comparison of individual scores to a normative clinical sample with a wide range of fatigability.
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Affiliation(s)
- Anna L Kratz
- Department of Physical Medicine and Rehabilitation, University of Michigan, 2800 Plymouth Road, North Campus Research Complex, B016-G017W, Ann Arbor, MI, USA.
| | - Noelle E Carlozzi
- Department of Surgery, University of Michigan, Ann Arbor, MI, USA
- Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA
| | - Susan L Murphy
- Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA
| | - Tiffany J Braley
- Department of Neurology, Divisions of MS/Neuroimmunology for Multiple Sclerosis and Sleep Medicine, University of Michigan, Ann Arbor, MI, USA
| | - Daniel Whibley
- Department of Physical Medicine and Rehabilitation, University of Michigan, 2800 Plymouth Road, North Campus Research Complex, B016-G017W, Ann Arbor, MI, USA
| | - David A Williams
- Department of Anesthesiology, University of Michigan, Ann Arbor, MI, USA
| | - Nora E Fritz
- Departments of Health Care Sciences and Neurology, Wayne State University School of Medicine, Detroit, MI, USA
| | - Michael Kallen
- Feinberg School of Medicine, Northwestern Medicine, Chicago, IL, USA
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Daley CL, Chalmers JD, Flume PA, Griffith DE, Hasegawa N, Morimoto K, Winthrop KL, Sheu CC, Avsar K, Andrisani D, Codecasa LR, Yuen DW, Hassan M, Nevoret ML, Mange K. Trial Conduct, Baseline Characteristics, and Symptom Burden of Patients in the ARISE Study. Pulm Ther 2025; 11:269-283. [PMID: 40198465 PMCID: PMC12102049 DOI: 10.1007/s41030-025-00293-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/17/2025] [Accepted: 03/12/2025] [Indexed: 04/10/2025] Open
Abstract
INTRODUCTION ARISE was a global clinical trial designed to generate evidence demonstrating the utility of the patient-reported outcome instruments Quality of Life-Bronchiectasis (QOL-B) [Respiratory Domain (RD) only] and Patient-Reported Outcomes Measurement Information System Short Form v1.0-Fatigue 7a (PROMIS F SF-7a) in patients with newly diagnosed or recurrent Mycobacterium avium complex lung disease (MACLD). Here, we describe trial conduct, patient characteristics, and patient-reported symptoms at baseline among patients enrolled in ARISE. METHODS Adult patients with newly diagnosed or recurrent non-cavitary MACLD who had not initiated antibiotic treatment for their current MAC infection were enrolled; data including comorbidities and prior MACLD history were collected during screening. Symptom burden was assessed using QOL-B, PROMIS F SF-7a, and Functional Assessment of Chronic Illness Therapy (FACIT) questionnaires. RESULTS Of 99 patients from 12 countries enrolled in ARISE, the median age was 69.0 years; most were white (80.8%) and female (77.8%). This was the first diagnosis of MACLD for 72.7% of patients. Patients frequently reported having a comorbid respiratory disorder: bronchiectasis (49.5%), asthma (21.2%), and chronic obstructive pulmonary disease (16.2%). At baseline, mean (± SD) and median QOL-B RD scores were 65.0 (± 15.3) and 66.7; PROMIS F SF-7a T-scores were 53.8 (± 8.2) and 55.1; and FACIT-Fatigue scores were 35.0 (± 9.6) and 37.0. CONCLUSIONS Patients in ARISE were representative of a real-world patient population with MACLD. Comorbid chronic respiratory diseases were common in patients with new or recurrent MACLD, and substantial disease burden at the time physicians initiated MACLD treatment was evidenced by impairment across measures of fatigue and QOL-B domains. CLINICALTRIALS GOV IDENTIFIER NCT04677543.
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Affiliation(s)
- Charles L Daley
- National Jewish Health and the University of Colorado School of Medicine, Denver, CO, USA
| | - James D Chalmers
- Division of Respiratory Medicine and Gastroenterology, Ninewells Hospital and Medical School, Dundee, Scotland, UK
| | | | - David E Griffith
- National Jewish Health and the University of Colorado School of Medicine, Denver, CO, USA
| | | | - Kozo Morimoto
- Fukujūji Hospital, Japan Anti-Tuberculosis Association, Tokyo, Japan
| | | | - Chau-Chyun Sheu
- Division of Pulmonary and Critical Care Medicine, Department of Internal Medicine, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan
| | | | - Dario Andrisani
- Respiratory Disease Unit, Azienda Policlinico di Modena, University of Modena and Reggio Emilia, Modena, Italy
| | - Luigi Ruffo Codecasa
- TB Reference Centre and Lab, Villa Marelli Institute, Niguarda Hospital, Milan, Italy
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Stutzbach JA, Sarmiento CA, Kenkre TS, Oleszek JL, Wisniewski SR, Gannotti M. Chronic lower back pain in adults with cerebral palsy: Stigma, anxiety, and physical decline. Dev Med Child Neurol 2025. [PMID: 40356363 DOI: 10.1111/dmcn.16357] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/10/2024] [Revised: 03/14/2025] [Accepted: 04/01/2025] [Indexed: 05/15/2025]
Abstract
AIM To determine the biopsychosocial factors associated with pain interference and pain intensity in adults with cerebral palsy (CP) and chronic lower back pain (LBP). METHOD This study was a cross-sectional data analysis of a community survey examining function and chronic pain in adults with CP. We examined bivariate relationships and built two regression models with pain interference with general activities and pain intensity as the dependent variables and biopsychosocial factors as explanatory factors. RESULTS We included 295 participants (75 males, 203 females, two transgender, 14 non-conforming) with CP and LBP in our analyses. The mean age was 43 years 2 months; 81% were ambulatory and pain was present for mean 17 years 11 months [SD 13 years 5 months]. Ordinary least squares regression models indicated greater pain interference with change in best motor function since childhood (95% confidence interval [CI] = 0.47-1.96; p = 0.002), stigma (95% CI = 0.02-0.15; p = 0.01), and higher anxiety (95% CI = 0.02-0.11; p = 0.01; n = 238; adjusted R2 = 0.17); and greater pain intensity with lower income (95% CI = -1.07 to -0.19; p = 0.01), Hispanic or Latino ethnic group (95% CI = 0.06-2.17; p = 0.04), higher anxiety (95% CI = 0.01-0.06; p = 0.01), and less satisfaction with social roles (95% CI = -0.10 to -0.04; p < 0.001; n = 290; adjusted R2 = 0.16). INTERPRETATION These findings emphasize the importance of interpreting chronic pain in the context of biopsychosocial factors, particularly anxiety, stigma, ethnic group, income, satisfaction with social roles, and physical functional decline.
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Affiliation(s)
- Julie A Stutzbach
- School of Rehabilitative and Health Sciences, Regis University, Denver, CO, USA
| | - Cristina A Sarmiento
- Department of Physical Medicine and Rehabilitation, University of Colorado Anschutz Medical Campus, Aurora, CO, USA
- Division of Pediatric Rehabilitation Medicine, Children's Hospital Colorado, Aurora, CO, USA
| | - Tanya S Kenkre
- Epidemiological Data Center, University of Pittsburgh, Pittsburgh, PA, USA
| | - Joyce L Oleszek
- Department of Physical Medicine and Rehabilitation, University of Colorado Anschutz Medical Campus, Aurora, CO, USA
- Division of Pediatric Rehabilitation Medicine, Children's Hospital Colorado, Aurora, CO, USA
| | | | - Mary Gannotti
- Department of Rehabilitation Sciences, University of Hartford, West Hartford, CT, USA
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Teunissen JS, van der Heijden B, Rodrigues JN, Issa F, Harrison CJ. Evaluating the precision of computer adaptive testing in longitudinal hand surgery analyses: A psychometric approach. J Plast Reconstr Aesthet Surg 2025; 104:434-439. [PMID: 40187042 DOI: 10.1016/j.bjps.2025.02.013] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/08/2024] [Revised: 02/09/2025] [Accepted: 02/10/2025] [Indexed: 04/07/2025]
Abstract
Patient-reported outcome measures (PROMs) are essential in hand surgery for assessing patient health but it can be time-consuming. Computerized adaptive testing (CAT) offers a more efficient alternative by reducing the number of questions asked. This study sourced the data of 268 patients undergoing cubital tunnel release from the UK Hand Registry to evaluate whether CAT's inherent imprecision affects longitudinal research conclusions. Mean patient evaluation measure (PEM) scores at baseline, 2 months and 6 months from the traditional full-length assessment (10 questions) were compared with the simulated scores assuming that the CAT version (median of 2 questions) was used. Both methods showed significant improvements in PEM scores post-surgery (p < 0.01), with minimal differences between the mean scores and overlapping confidence intervals. These findings confirm that CAT replicates full-length PROM results while significantly reducing patient burden, thereby supporting its use in clinical and research settings for hand surgery. LEVEL OF EVIDENCE: III.
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Affiliation(s)
- J S Teunissen
- Department of Plastic, Reconstructive and Hand Surgery, Radboud Institute of Health Research, Radboud University Medical Centre, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands; Nuffield Department of Surgical Sciences, University of Oxford, Oxford OX3 9DU, UK; Department of Plastic, Reconstructive and Hand Surgery, Erasmus MC, Dr. Molewaterplein 40, 3015 GD Rotterdam, the Netherlands
| | - Bepa van der Heijden
- Department of Plastic, Reconstructive and Hand Surgery, Radboud Institute of Health Research, Radboud University Medical Centre, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands; Department of Plastic, Reconstructive and Hand Surgery, Jeroen Bosch Hospital, Henri Dunantstraat 1, 5223 GZ 's-Hertogenbosch, the Netherlands
| | - J N Rodrigues
- Warwick Clinical Trials Unit, University of Warwick, Coventry CV4 7AL, UK; Department of Plastic, Reconstructive, and Hand Surgery, Stoke Mandeville Hospital, Mandeville Rd, Aylesbury HP21 8AL, UK.
| | - F Issa
- Nuffield Department of Surgical Sciences, University of Oxford, Oxford OX3 9DU, UK
| | - C J Harrison
- Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford OX3 7LD, UK
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Blomqvist I, Chaplin JE, Henje E, Dennhag I. Psychometric properties and post-hoc CAT analysis of the pediatric PROMIS® item banks anxiety and depressive symptoms in a combined Swedish Child and Adolescent Psychiatry and School sample. Qual Life Res 2025; 34:1265-1275. [PMID: 39883384 PMCID: PMC12064460 DOI: 10.1007/s11136-025-03898-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/08/2025] [Indexed: 01/31/2025]
Abstract
PURPOSE The objective of this study is to assess the psychometric properties and reliability of the Swedish Patient-Reported Outcomes Measurement Information System (PROMIS) item banks for anxiety and depressive symptoms with item response theory analysis and post-hoc computerized adaptive testing in a combined Swedish Child and Adolescent Psychiatry (CAP) and school sample. METHODS Participants (n = 928, age 12-20) were recruited from junior and high schools and Child and Adolescent Psychiatry Clinics in the region of Västerbotten. Unidimensionality, local independence, and monotonicity was tested. We fitted a graded response model to the data and tested differential item functioning (DIF) for sex, age group, sample type, and language (Swedish vs. U.S.). Moreover, a post-hoc computer adaptive testing (CAT) simulation was performed. All analysis were made in R. RESULTS Unidimensionality, local independence, and monotonicity were acceptable. The graded response model yielded acceptable item fit, discriminative, and threshold values for all items in both item banks. DIF for language (Swedish vs. U.S.) was found for two items from the anxiety and one item from the depressive symptoms item banks. A Stocking-lord transformation was used for the items displaying language DIF, and post-hoc CAT simulations were performed. The post-hoc CAT simulation showed reliability around 0.9 for both Swedish and official U.S. item parameters T-scores calibration from within normal limits to severe anxiety and depressive symptoms. CONCLUSION The Swedish pediatric PROMIS item banks of anxiety and depressive symptoms are appropriate to assess mild to severe symptoms of anxiety and depressive symptoms in Swedish school- and CAP samples.
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Affiliation(s)
- Ida Blomqvist
- Department of Clinical Science, Child- and Adolescent Psychiatry, Umeå University, 90185, Umeå, Sweden.
| | - John Eric Chaplin
- Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden
| | - Eva Henje
- Department of Clinical Science, Child- and Adolescent Psychiatry, Umeå University, 90185, Umeå, Sweden
| | - Inga Dennhag
- Department of Clinical Science, Child- and Adolescent Psychiatry, Umeå University, 90185, Umeå, Sweden
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Malik GR, Cheng J, Rothman R, Leupold O, Jawetz S, Prather H. Characterization and variability of PROMIS-10 scores with physical therapy in knee osteoarthritis: A retrospective review. PM R 2025; 17:496-504. [PMID: 39803942 DOI: 10.1002/pmrj.13308] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/26/2024] [Revised: 09/15/2024] [Accepted: 10/03/2024] [Indexed: 05/11/2025]
Abstract
BACKGROUND Knee osteoarthritis (OA) and its impairments affect patients' physical and mental health. Radiographically severe knee OA is believed to respond less to conservative treatments including physical therapy (PT) but has not been compared specifically with Patient-Reported Outcomes Measurement Information System (PROMIS)-10. OBJECTIVE To correlate baseline PROMIS-10 physical and mental health scores in patients undergoing PT for knee OA, subgrouped by radiographic severity (Kellgren-Lawrence [KL] grade and number of knee compartments involved). Additionally, to describe the relationship between radiographic severity of knee OA and the change in PROMIS-10 scores post-PT. DESIGN Retrospective review. SETTING Outpatient musculoskeletal clinics at an orthopedic specialty hospital. PATIENTS (OR PARTICIPANTS) One hundred nine patients (age ≥ 18 years) who presented for evaluation of knee OA from April 1, 2019 to August 1, 2021, had baseline radiographs, underwent PT, and completed PROMIS-10 at baseline and follow-up. INTERVENTIONS PT. MAIN OUTCOME MEASURE(S) PROMIS-10 physical and mental health scores. RESULTS Participants were 60% female; average age was 66.6 ± 10.0 years. Baseline PROMIS-10 physical and mental health scores averaged 44.4 ± 7.2 and 52.8 ± 9.0. Post-PT PROMIS-10 physical and mental health scores averaged 44.7 ± 6.7 and 52.6 ± 8.7. Physical health scores improved in 39% of patients; mental health scores improved in 36% of patients (no statistical significance). There was no relationship between post-PT PROMIS-10 scores and radiographic severity of knee OA. Females exhibited osteoarthritic changes in all compartments in 72% of cases compared to 55% of males (p = .020). Females demonstrated a higher predisposition for lateral compartment involvement (83% vs. 64%; p = .021) and a higher proportion of severe OA, radiographically, with a KL grade 3-4 (92% vs. 80%; p = .051). CONCLUSIONS More than one third of patients with knee OA reported improved physical and mental health post-PT. The degree of benefit did not relate to radiographic severity. Although OA is characterized by radiographic measurements, there are variables beyond the radiographic imaging that may affect patient outcomes.
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Affiliation(s)
- George R Malik
- Spaulding Rehabilitation Hospital and Harvard Medical School, Boston, MA, USA
| | - Jennifer Cheng
- Department of Physiatry, Hospital for Special Surgery, New York, New York, USA
| | - Rachel Rothman
- Department of Physiatry, Hospital for Special Surgery, New York, New York, USA
| | - Olivia Leupold
- Department of Physiatry, Hospital for Special Surgery, New York, New York, USA
| | - Shari Jawetz
- Department of Radiology, Hospital for Special Surgery, New York, New York, USA
| | - Heidi Prather
- Department of Physiatry, Hospital for Special Surgery, New York, New York, USA
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Brinker AY, Nolte S, Fischer FH, Obbarius A, Rose M, Liegl G. Comparing Approaches to Link SF-36 PF-10 Scores to PROMIS Physical Function: A Validation Study in Three Clinical Samples. J Gen Intern Med 2025:10.1007/s11606-025-09496-5. [PMID: 40301213 DOI: 10.1007/s11606-025-09496-5] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/21/2024] [Accepted: 03/28/2025] [Indexed: 05/01/2025]
Abstract
BACKGROUND Physical function (PF) is a central patient-reported outcome (PRO) in many clinical conditions. However, the variety of existing PRO measures (PROMs) yield scores on different scales, limiting the score comparability and interpretability. To overcome this gap, the Patient-Reported Outcomes Measurement Information System (PROMIS®) established a standardized T-score metric using item response theory (IRT). As such, different PROMs measuring PF can be linked to this common metric, allowing for efficient harmonization of scores. Linking algorithms allow conversion of SF-36 PF-10 scores to the PROMIS-PF metric, but these methods have not been validated in independent clinical samples. OBJECTIVE To validate and compare two established linking methods for the translation of SF-36 PF-10 scores to the PROMIS-PF metric in clinical populations. DESIGN Two previously proposed linking approaches were applied to estimate PROMIS-PF T-scores based on the SF-36 PF-10: 1. Item-level linking, 2. Cross-walk tables. The directly observed T-scores from the 20-item PROMIS-PF short form (PROMIS-PF20a) served as a benchmark against which the linked T-scores from the SF-36 PF-10 were compared. Results were compared to a newly estimated IRT-model based on the study's dataset. PARTICIPANTS Patients from cardiology (n = 185), rheumatology (n = 172), and psychosomatic medicine (n = 262), who completed both the PROMIS-PF20a and the SF-36 PF-10. MAIN MEASURES PROMIS-PF20a, SF-36 PF-10. KEY RESULTS All linking approaches demonstrated high association with observed PROMIS-PF20a T-scores (Pearson correlation ≥ 0.84) and indicated negligible practical differences at the group level (standardized mean difference < 0.2). CONCLUSIONS Two currently available linking approaches can reliably translate SF-36 PF-10 scores to standardized PROMIS-PF T-scores across different clinical samples, eliminating the need for re-estimating models in new datasets. As all linking algorithms ultimately presented highly comparable results, cross-walk tables may be preferred as the most practicable approach, allowing for score conversion without complex statistical modeling.
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Affiliation(s)
- Audrey Yuki Brinker
- Center for Patient-Centered Outcomes Research (CPCOR), Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin, and Berlin Institute of Health, Berlin, Germany.
| | - Sandra Nolte
- Person-Centred Research, Eastern Health Clinical School, Monash University, Melbourne, VIC, Australia
- School of Health Sciences, Swinburne University of Technology, Melbourne, VIC, Australia
| | - Felix H Fischer
- Center for Patient-Centered Outcomes Research (CPCOR), Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin, and Berlin Institute of Health, Berlin, Germany
| | - Alexander Obbarius
- Center for Patient-Centered Outcomes Research (CPCOR), Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin, and Berlin Institute of Health, Berlin, Germany
| | - Matthias Rose
- Center for Patient-Centered Outcomes Research (CPCOR), Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin, and Berlin Institute of Health, Berlin, Germany
| | - Gregor Liegl
- Center for Patient-Centered Outcomes Research (CPCOR), Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin, and Berlin Institute of Health, Berlin, Germany
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Eilayyan O, Câmara S, Curcio CL, Gomes CDS, Gomez F, Guerra R, Ahmed T, Auais M. Item Response Theory of the English Version of the Falls Efficacy Scale-International Tool Among Community-Dwelling Older Adults From Four Different Sites. J Geriatr Phys Ther 2025:00139143-990000000-00071. [PMID: 40250448 DOI: 10.1519/jpt.0000000000000445] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/20/2025]
Abstract
BACKGROUND AND PURPOSE The Falls Efficacy Scale-International (FES-I) is widely used in clinical practice, but it is unclear how each item can discriminate different levels of fall concern. This study applied item response theory (IRT) to evaluate the psychometric properties of each item in the original English version of FES-I among older adults, and compared those properties across genders and with translations in French, Portuguese, and Spanish. METHODS This cross-sectional study used data from the International Mobility in Aging Study, which recruited community-dwelling older adults. Modified graded IRT was used to assess the psychometric properties of the FES-I items, specifically estimating difficulty and discrimination (ie, ability to differentiate levels of fall concern) parameters. Item reliability across the different levels of fall concern was estimated and differential item functioning (DIF) was tested for each item to assess if participants perceived the items similarly regardless of gender and language. RESULTS AND DISCUSSION The study included 1608 community-dwelling older adults, of which 395 had completed the English version of the FES-I. Generally, the IRT results showed that the English version was a reliable tool, especially for older adults with high fall concerns, but did not distinguish between low and moderate levels of concern. Factor analysis supported the construct validity of the FES-I. In the DIF analysis, 2 items were perceived differently by gender in the English version, and 9 items were perceived differently between the English and the translated versions (French, Spanish, and Portuguese). The presence of DIF indicates that the psychometric properties of these items are different across genders and languages, and they might relate to cultural factors, the surrounding environment, the wording, the biological differences between men and women, and the item's task itself. CONCLUSIONS The FES-I is a reliable and valid scale for identifying older adults with high fall concern, but it should include more difficult items. Additionally, differing perceptions of items across genders and languages necessitate caution in comparing results among diverse populations.
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Affiliation(s)
- Owis Eilayyan
- Department of Physical Therapy, Al-Ahliyya Amman University, Amman, Jordan
| | - Saionara Câmara
- Departamento de Fisioterapia, Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brazil
| | - Carmen-Lucia Curcio
- Facultad de Ciencias para la Salud, Universidad de Caldas, Manizales, Colombia
| | | | - Fernando Gomez
- Facultad de Ciencias para la Salud, Universidad de Caldas, Manizales, Colombia
| | - Ricardo Guerra
- Departamento de Fisioterapia, Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brazil
| | - Tamer Ahmed
- Queen's University, School of Rehabilitation Therapy, Kingston, Ontario, Canada
| | - Mohammad Auais
- Queen's University, School of Rehabilitation Therapy, Kingston, Ontario, Canada
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Hansen TN, Christensen KB, Stahlhut M, Ketelaar M, Klevberg GL, Laursen LB, Kristensen MR, Jahnsen R, Hansen T. Use of the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test in Denmark, the Netherlands, and Norway. Dev Med Child Neurol 2025. [PMID: 40249747 DOI: 10.1111/dmcn.16324] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/27/2024] [Revised: 02/25/2025] [Accepted: 03/05/2025] [Indexed: 04/20/2025]
Abstract
AIM To investigate whether the items of the Danish, Dutch, and Norwegian versions of the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) align with the location-order used in the original algorithm and to assess their structural validity. METHOD Three convenience samples without disability (0-20 years; Danish [n = 318], Dutch [n = 349], Norwegian [n = 362]) responded to the language-specific versions. Item location-order was estimated using the graded response model and structural validity was tested using confirmatory factor analysis and Rasch analysis. RESULTS For most items, the item location-order was largely consistent with the location-order used in the original PEDI-CAT algorithm. Items showing a different order were primarily related to the daily activity domain. However, the confirmatory factor analysis and Rasch analysis indicated poor model fit, multidimensionality, and local dependency. Additionally, the Rasch analysis revealed that some items were misfitting, with a few also showing signs of misfit in the original PEDI-CAT version. Few items displayed differential item functioning by sex. INTERPRETATION The Danish, Dutch, and Norwegian version of the PEDI-CAT can be used to measure the degree of functioning or responsibility. However, clinicians should interpret the PEDI-CAT results with caution due to evidence of multidimensionality, some misfit items, and differential item functioning by sex. Further research is warranted in a population of children and young people with disabilities.
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Affiliation(s)
- Tea Nørgaard Hansen
- Department of Occupational Therapy and Physiotherapy, Copenhagen University Hospital Amager and Hvidovre, Hvidovre, Denmark
| | - Karl Bang Christensen
- Section of Biostatistics, Department of Public Health, University of Copenhagen, Copenhagen, Denmark
| | - Michelle Stahlhut
- Center for Clinical Research and Prevention, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark
| | - Marjolijn Ketelaar
- Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands
| | - Gunvor Lilleholt Klevberg
- Norwegian Quality and Surveillance Registry for Cerebral Palsy, Department of Neurosciences for Children, Oslo University Hospital, Oslo, Norway
| | - Louise Bolvig Laursen
- Department of Occupational Therapy and Physiotherapy, Copenhagen University Hospital Amager and Hvidovre, Hvidovre, Denmark
| | - Mette Røn Kristensen
- Department of Occupational Therapy and Physiotherapy, Copenhagen University Hospital Amager and Hvidovre, Hvidovre, Denmark
| | - Reidun Jahnsen
- Norwegian Quality and Surveillance Registry for Cerebral Palsy, Department of Neurosciences for Children, Oslo University Hospital, Oslo, Norway
| | - Tina Hansen
- Physical Medicine & Rehabilitation Research - Copenhagen (PMR-C), Copenhagen University Hospital Amager and Hvidovre, Hvidovre, Denmark
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11
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Tigelaar LG, Haveman LM, Bekkering WP, Oude Lansink ILB, Rohrich CD, Van der Hoek H, Beek LR, Van Dijk J, Langemeijer MEM, Slooff-Lentink RW, Van der Aa-Van Delden AM, Maurice-Stam H, Peek AML, Van der Pal HJH, Koopman MMW, Kremer LCM, Westerbos SJ, Van Tinteren H, Bramer JAM, Van de Sande MAJ, Grootenhuis MA, Schreuder HWB, Merks JHM. A multidisciplinary and structured approach for comprehensive evaluation of functional outcomes, adverse events, psychosocial outcomes and health-related quality of life after local therapy for bone sarcoma in children: protocol for a cross-sectional study. Front Pediatr 2025; 13:1534153. [PMID: 40303553 PMCID: PMC12037555 DOI: 10.3389/fped.2025.1534153] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/25/2024] [Accepted: 03/20/2025] [Indexed: 05/02/2025] Open
Abstract
Introduction Bone sarcoma patients face intensive treatment, including life-changing local therapy, which impacts both short- and long-term functioning. Moreover, bone sarcoma survivors experience the highest burden of adverse events of all childhood cancer survivors. To address these issues, we set up a structured multidisciplinary outpatient follow-up clinic for patients who completed treatment and integrated this clinic into the standard of care. This study protocol describes the methodology of a cross-sectional study that aims to systematically report the functional outcomes, adverse events, psychosocial outcomes and health-related quality of life of the cohort seen at this clinic. Methods and analysis Participants are recruited at the multidisciplinary follow-up clinic and their consent is obtained. Standard of care clinical assessments serve as the primary data source for this study. Furthermore, additional research assessments are performed to further expand our knowledge. Assessments are structured by standardized assessment sets that we developed based on literature review and joint national expertise in bone sarcoma care. The sets comply with international guidelines such as the World Health Organization's International Classification of Functioning, disability and health, and include a combination of patient-reported, clinician-reported and performance-based outcome measures for comprehensive representation of outcomes. Discussion This study will generate valuable knowledge on the functional outcomes, adverse events, psychosocial outcomes and quality of life of a national cohort of pediatric bone sarcoma patients in follow-up care. By aligning additional research assessments with standardized patient care, a comprehensive range of outcomes will be obtained while minimizing the patient's burden. Moreover, this protocol may serve as a template for clinics and research internationally, allowing for the merging of standardized outcome data in such rare disease. This will facilitate the optimization of current patient care and inform the important shared decision-making process for local treatment in future patients.
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Affiliation(s)
| | | | | | - Irene L. B. Oude Lansink
- Department of Pediatric Rehabilitation, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, Netherlands
| | - Christel D. Rohrich
- Department of Pediatric Rehabilitation, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, Netherlands
| | | | - Laura R. Beek
- Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands
| | | | | | | | | | | | | | | | | | | | | | | | - Jos A. M. Bramer
- Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands
- Department of Orthopedic Surgery and Sports Medicine, Amsterdam Movement Sciences, Cancer Center Amsterdam, Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, Netherlands
| | - Michiel A. J. Van de Sande
- Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands
- Department of Orthopedic Surgery, Leiden University Medical Center, Leiden, Netherlands
| | | | - Hendrik W. B. Schreuder
- Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands
- Department of Orthopedic Surgery, Radboud University Medical Center, Nijmegen, Netherlands
| | - Johannes H. M. Merks
- Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands
- Division of Imaging and Oncology, University Medical Center Utrecht, Utrecht University, Utrecht, Netherlands
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12
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Pereira LM, Moore JB, Strahley AE, Duckworth KE, Ip EH, Fingeret M, Sanford SD, Canzona MR, Victorson DE, Reeve BB, Roth M, Smith R, Salsman JM. Designing a Measure of Body Image: Cognitive Interview Findings from an Adolescent and Young Adult Cancer Sample. J Adolesc Young Adult Oncol 2025; 14:187-193. [PMID: 39535857 DOI: 10.1089/jayao.2024.0050] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2024] Open
Abstract
Purpose: A cancer diagnosis in adolescence and young adulthood significantly impacts a person's quality of life, particularly concerning identity, self-esteem, and subsequently, body image. This study aims to develop a psychometrically-sound patient-reported outcome measure of body image for adolescent and young adult (AYA) oncology patients that was guided by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS) Scientific Standards and our past concept elicitation interviews with AYAs. Methods: We conducted a multi-step approach involving item identification, refinement, generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYA patients participated, ensuring representation across educational levels, gender, treatment status, and cancer type. Results: Translatability and reading level reviews facilitated language adjustments. Cognitive interviews revealed that 76% of AYAs found the 50 candidate items assessing body image concerns to be easy to answer. AYAs reported that the body image items captured their lived experiences. Three items were excluded due to comprehension difficulties. Conclusion: This study addresses the critical gap in validated measures for assessing body image in AYA oncology patients. Interview findings provided evidence for the content validity and comprehensibility for 47 items assessing body image. The next steps involve large-scale psychometric testing to evaluate the reliability and validity of the body image items to form an item bank allowing the design of short forms or use of computerized-adaptive testing. Ultimately, this work lays the foundation for developing interventions to mitigate the impact of cancer on AYAs' body image during diagnosis, treatment, and recovery.
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Affiliation(s)
- Lila M Pereira
- Division of Pediatric Hematology, Department of Pediatrics, New York Medical College, Oncology, and Stem Cell Transplantation, Valhalla, New York, USA
| | - Justin B Moore
- Division of Public Health Sciences, Department of Implementation Science, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | - Ashley E Strahley
- Division of Public Health Sciences, Department of Social Sciences & Health Policy, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | - Katharine E Duckworth
- Department of Internal Medicine, Section on Hematology and Oncology, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | - Edward H Ip
- Division of Public Health Sciences, Department of Biostatistics & Data Science, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | | | - Stacy D Sanford
- Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
| | - Mollie R Canzona
- Division of Public Health Sciences, Department of Social Sciences & Health Policy, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
- Department of Communication, Wake Forest University, Winston-Salem, North Carolina, USA
| | | | - Bryce B Reeve
- Department of Population Health Sciences, Center for Health Measurement, Duke University School of Medicine, Durham, North Carolina, USA
| | - Michael Roth
- Division of Pediatrics, University of Texas MD Anderson Cancer Center, Houston, Texas, USA
| | - Regina Smith
- Division of Public Health Sciences, Department of Social Sciences & Health Policy, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | - John M Salsman
- Division of Public Health Sciences, Department of Social Sciences & Health Policy, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
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13
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Canzona MR, Victorson DE, Murphy KM, Clayman ML, Reeve BB, Patel B, Strahley AE, McLean TW, Harry O, Roth ME, Smith RV, Salsman JM. Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer. J Adolesc Young Adult Oncol 2025; 14:180-186. [PMID: 39162473 DOI: 10.1089/jayao.2024.0042] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/21/2024] Open
Abstract
Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.
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Affiliation(s)
- Mollie Rose Canzona
- Communication Science, Wake Forest University, Winston-Salem, North Carolina, USA
- Department of Social Sciences & Health Policy, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | - David E Victorson
- Medical Social Sciences, Northwestern University Feinberg School of Medicine, Evanston, Illinois, USA
| | - Karly M Murphy
- Department of Psychology, East Carolina University, Greenville, North Carolina, USA
| | - Marla L Clayman
- Center for Healthcare Organization and Implementation Research (CHOIR), Veterans Health Administration, Bedford, Massachusetts, USA
- Department of Population and Quantitative Health Sciences, UMass Chan Medical School, Worcester, Massachusetts, USA
| | - Bryce B Reeve
- Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA
| | - Bonnie Patel
- Obstetrics and Gynecology, Reproductive Medicine, Wake Forest Baptist Health, Winston-Salem, North Carolina, USA
| | - Ashley E Strahley
- Qualitative and Patient-Reported Outcomes Shared Resource, Wake Forest School of Medicine, Winston-Salem, North Carolina, USA
| | - Thomas W McLean
- Pediatric Hematology & Oncology, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | - Onengiya Harry
- Pediatrics - Rheumatology, Wake Forest School of Medicine, Winston-Salem, North Carolina, USA
| | - Michael E Roth
- Division of Pediatrics, Maryland Anderson Cancer Center, Houston, Texas, USA
| | - Regina V Smith
- Clinical and Translational Science Institute, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
| | - John M Salsman
- Social Sciences & Health Policy, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA
- Atrium Health Wake Forest Baptist Comprehensive Cancer Center, Winston-Salem, North Carolina, USA
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14
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Ardalan K, Marques MC, Cella D, Curran ML, Gray EL, Lee J, Fahey KJ, Wolfe ML, Pachman LM, Chang RW. Psychometric properties of patient-reported outcomes measurement information system (PROMIS) fixed short forms in Juvenile Myositis. Semin Arthritis Rheum 2025; 71:152649. [PMID: 39933204 PMCID: PMC11890175 DOI: 10.1016/j.semarthrit.2025.152649] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/26/2024] [Revised: 01/08/2025] [Accepted: 01/22/2025] [Indexed: 02/13/2025]
Abstract
OBJECTIVES Assess reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric self-report and parent-proxy report fixed short forms in juvenile myositis (JM). METHODS Children with JM (8-17yo) and parents of 5-17 yo JM patients completed PROMIS measures (Physical Function, Pain Interference, Fatigue, Emotional Distress), PedsQL Generic Core scales and Rheumatology Module (PedsQL-GC/-RM). Internal consistency reliability was assessed via Cronbach's alpha. Patient-parent agreement was assessed via intraclass correlations (ICC). Concurrent and construct validity were assessed via Spearman's correlations between PROMIS versus PedsQL-GC/-RM and clinical/lab data respectively. Known-groups validity was assessed by comparing PROMIS T-scores between clinically distinct JM patients. RESULTS We enrolled 75 JM participants, with 57 administered self-report and all 75 administered parent-proxy report measures per participant age. PROMIS measures were feasible (>96% completion), with high internal consistency reliability (Cronbach's alpha >0.8). Patient-parent assessments demonstrated moderate agreement (ICC >0.5) for Mobility, Upper Extremity, and Fatigue domains, and smaller correlations (ICC 0.41-0.47) as expected for Pain Interference, Depressive Symptoms, and Anxiety. Concurrent validity was demonstrated by moderate correlation (Spearman's rho >0.5) for all but 1 hypothesized relationships of PROMIS and PedsQL-GC/-RM domains. Although low disease activity and small sample size limited statistical power, construct validity and known-groups validity were demonstrable for multiple PROMIS pediatric self-report and parent-proxy report measures. CONCLUSION PROMIS measures show evidence of reliability and validity in JM. Child and parent reports differ sufficiently to suggest both should be collected. PROMIS measures can be considered for clinical and research use in JM.
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Affiliation(s)
- Kaveh Ardalan
- Division of Pediatric Rheumatology, Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA; Division of Rheumatology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Departments of Pediatrics and Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
| | - Mariana C Marques
- National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, USA
| | - David Cella
- Departments of Medical Social Sciences, Neurology, and Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Megan L Curran
- Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA
| | - Elizabeth L Gray
- Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Jungwha Lee
- Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Kyle J Fahey
- Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, Stanford University School of Medicine, Stanford, CA, USA
| | - Madison L Wolfe
- Division of Rheumatology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA
| | - Lauren M Pachman
- Division of Rheumatology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, The Cure JM Center of Excellence, The Stanley Manne Children's Research Center, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Rowland W Chang
- Departments of Preventive Medicine, Medicine, and Physical Medicine & Rehabilitation, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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15
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Moein S, Peterson EW, Kottorp A, Thompson C, Mahajan HP, Rice LA. Development, reliability, and validity assessment of a fall concerns scale for people who use wheelchairs and scooters (FCS-WC/S). Disabil Rehabil 2025; 47:2123-2133. [PMID: 39140641 DOI: 10.1080/09638288.2024.2391107] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/12/2024] [Revised: 08/05/2024] [Accepted: 08/07/2024] [Indexed: 08/15/2024]
Abstract
PURPOSE To evaluate the psychometric properties of a Fall Concerns Scale for people who use Wheelchairs and Scooters (FCS-WC/S). MATERIALS AND METHODS Developed by fall prevention experts, FCS-WC/S underwent refinement through interdisciplinary reviews and focus groups with researchers, clinicians, and individuals who use WC/S full-time. The psychometric evaluation involved adults who used WC/S for ≥1 year and had ≥1 fall in the previous 3 years, recruited between April and September 2022. RESULTS The FCS-WC/S evaluates fall concerns among people with various health conditions who use WC/S full-time across 33 daily activities. One hundred and twenty-four participants responded to the baseline survey. A subgroup of 63 people repeated the FCS-WC/S a week later. The FCS-WC/S demonstrated excellent internal and good test-retest reliability (α ≥ 0.90, ICC = 0.86-0.9), as well as concurrent validity (Spearman's rho = 0.72) with the Spinal Cord Injury Falls Concern Scale (SCI-FCS). It effectively differentiated fear of falling levels from an established measure (ORs 4.1, 25.8, 46.7). Factor and parallel analysis revealed three factors, two of which were retained for further analysis. CONCLUSIONS Preliminary findings support FCS-WC/S validity and reliability for assessing fall concerns among individuals with various conditions who use WC/S. Further scale construction analysis is recommended.
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Affiliation(s)
- Sahel Moein
- Department of Kinesiology and Community Health, College of Applied Health Sciences, University of Illinois at Urbana-Champaign, Urbana, IL, USA
| | - Elizabeth W Peterson
- Department of Occupational Therapy, University of Illinois at Chicago, Chicago, IL, USA
| | - Anders Kottorp
- Faculty of Health and Society, Malmö University, Malmö, Sweden
| | - Charee Thompson
- Department of Communication, University of Illinois at Urbana-Champaign, Urbana, IL, USA
| | - Harshal P Mahajan
- Department of Kinesiology and Community Health, College of Applied Health Sciences, University of Illinois at Urbana-Champaign, Urbana, IL, USA
| | - Laura A Rice
- Department of Kinesiology and Community Health, College of Applied Health Sciences, University of Illinois at Urbana-Champaign, Urbana, IL, USA
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Goode AP, Goertz C, Chakraborty H, Salsbury SA, Broderick S, Levy BT, Ryan K, Settles S, Hort S, Dolor RJ, Chrischilles EA, Kasper S, Stahl JE, Almond C, Reed SD, Shannon Z, Harris D, Daly J, Winokur P, Lurie JD. Implementation of the American- College of Physicians Guideline for Low Back Pain (IMPACt-LBP): protocol for a healthcare systems embedded multisite pragmatic cluster-randomised trial. BMJ Open 2025; 15:e097133. [PMID: 40139699 PMCID: PMC11950946 DOI: 10.1136/bmjopen-2024-097133] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/25/2024] [Accepted: 02/28/2025] [Indexed: 03/29/2025] Open
Abstract
INTRODUCTION Low back pain (LBP) is a key source of medical costs and disability, impacting over 31 million Americans at any given time and resulting in US$100-US$200 billion per year in total healthcare costs. LBP is one of the leading causes of ambulatory care visits to US physicians; problematically, these visits often result in treatments such as opioids, surgery or advanced imaging that can lead to more harm than benefit. The American College of Physicians (ACP) Guideline for Low Back Pain recommends patients receive non-pharmacological interventions as a first-line treatment. Roadmaps exist for multidisciplinary collaborative care that include well-trained primary contact clinicians with specific expertise in the treatment of musculoskeletal conditions, such as physical therapists and doctors of chiropractic, as first-line providers for LBP. These clinicians, sometimes referred to as primary spine practitioners (PSPs) routinely employ many of the non-pharmacological approaches recommended by the ACP guideline, including spinal manipulation and exercise. Important foundational work has demonstrated that such care is feasible and safe, and results in improved physical function, less pain, fewer opioid prescriptions and reduced utilisation of healthcare services. However, this treatment approach for LBP has yet to be widely implemented or tested in a multisite clinical trial in real-world practice. METHODS AND ANALYSIS The Implementation of the American College of Physicians Guideline for Low Back Pain trial is a health system-embedded pragmatic cluster-randomised trial that will examine the effect of offering initial contact with a PSP compared with usual primary care for LBP. Twenty-six primary care clinics within three healthcare systems were randomised 1:1 to PSP intervention or usual primary care. Primary outcomes are pain interference and physical function using the Patient-Reported Outcomes Measurement Information System Short Forms collected via patient self-report among a planned sample of 1800 participants at baseline, 1, 3 (primary end point), 6 and 12 months. A subset of participants enrolled early in the trial will also receive a 24-month assessment. An economic analysis and analysis of healthcare utilisation will be conducted as well as an evaluation of the patient, provider and policy-level barriers and facilitators to implementing the PSP model using a mixed-methods process evaluation approach. ETHICS AND DISSEMINATION The study received ethics approval from Advarra, Duke University, Dartmouth Health and the University of Iowa Institutional Review Boards. Study data will be made available on completion, in compliance with National Institutes of Health data sharing policies. TRIAL REGISTRATION NUMBER NCT05626049.
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Grants
- UL1 TR002537 NCATS NIH HHS
- U24 AT011189 NCCIH NIH HHS
- U24 AT009676 NCCIH NIH HHS
- UG3 AT011187 NCCIH NIH HHS
- UH3 AT011187 NCCIH NIH HHS
- National Center for Advancing Translational Sciences of the National Institutes of Health
- NIH Pragmatic Trials Collaboratory Coordinating Center through cooperative agreement from NCCIH, the National Institute of Allergy and Infectious Diseases (NIAID), the National Cancer Institute (NCI), the National Institute on Aging (NIA), the National Heart, Lung, and Blood Institute (NHLBI), the National Institute of Nursing Research (NINR), the National Institute of Minority Health and Health Disparities (NIMHD), NIAMS, the NIH Office of Behavioral and Social Sciences Research (OBSSR), and the NIH Office of Disease Prevention (ODP)
- National Institutes of Health (NIH) Pragmatic Trials Collaboratory by cooperative agreements (Clinical Coordinating Center and Data Coordinating Center) from the National Center for Complementary and Integrative Health (NCCIH), the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
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Affiliation(s)
- Adam P Goode
- Duke University School of Medicine, Durham, North Carolina, USA
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
| | - Christine Goertz
- Duke University School of Medicine, Durham, North Carolina, USA
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
| | - Hrishikesh Chakraborty
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
- Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina, USA
| | - Stacie A Salsbury
- Palmer Center for Chiropractic Research, Palmer College of Chiropractic, Davenport, Iowa, USA
| | - Samuel Broderick
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
| | - Barcey T Levy
- Family and Community Medicine, The University of Iowa Roy J and Lucille A Carver College of Medicine, Iowa City, Iowa, USA
- College of Public Health, Department of Epidemiology, The University of Iowa, Iowa City, Iowa, USA
| | - Kelley Ryan
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
| | - Sharon Settles
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
| | - Shoshana Hort
- Department of Medicine, Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire, USA
| | - Rowena J Dolor
- Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA
| | - Elizabeth A Chrischilles
- College of Public Health, Department of Epidemiology, The University of Iowa, Iowa City, Iowa, USA
| | - Stacie Kasper
- Family and Community Medicine, The University of Iowa Roy J and Lucille A Carver College of Medicine, Iowa City, Iowa, USA
| | - James E Stahl
- Department of Medicine, Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire, USA
| | - Chandra Almond
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
| | - Shelby D Reed
- Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA
| | - Zacariah Shannon
- Palmer Center for Chiropractic Research, Palmer College of Chiropractic, Davenport, Iowa, USA
| | - Debra Harris
- Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA
| | - Jeanette Daly
- Family and Community Medicine, The University of Iowa Roy J and Lucille A Carver College of Medicine, Iowa City, Iowa, USA
| | - Patricia Winokur
- Internal Medicine, The University of Iowa Roy J and Lucille A Carver College of Medicine, Iowa City, Iowa, USA
| | - Jon D Lurie
- Medicine, Orthopaedics, Health Policy, and Clinical Practice, Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire, USA
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Evon DM, Reeve BB. Assessing patient-reported outcomes in primary sclerosing cholangitis: an update. Curr Opin Gastroenterol 2025; 41:59-66. [PMID: 39819655 DOI: 10.1097/mog.0000000000001075] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/19/2025]
Abstract
PURPOSE OF REVIEW Patient-reported outcome (PRO) measures validated in primary sclerosing cholangitis (PSC) are needed for clinical trials. This review describes the recent US Food & Drug Administration (FDA) Patient-Focused Drug Development (PFDD) guidelines, existing PRO measures used in PSC studies, and the design of PSC-specific symptom measures adherent with the guidelines. RECENT FINDINGS FDA released updated guidance reflecting best practices for the design and evaluation of clinical outcome assessments (including PROs) and the design of trial endpoints. Two recent systematic reviews (2018, 2020) identified multiple PRO measures used in PSC studies, with two additional measures published since. Of these, four were developed in samples inclusive of PSC patients and six have been psychometrically evaluated in PSC. Published evidence to sufficiently support alignment with the recent guidance is sparse. We review the design of three symptom measures for PSC to illustrate alignment with FDA guidance, including qualitative and quantitative studies to provide evidence for their validity for use in adult PSC trials. SUMMARY Investigators planning to use PRO measures as study endpoints for PSC need to be adherent with the recent FDA guidelines and build the evidence base to support the measure as fit-for-purpose as an endpoint for clinical trials.
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Affiliation(s)
- Donna M Evon
- Division of Gastroenterology and Hepatology, Department of Medicine, University of North Carolina, Chapel Hill
| | - Bryce B Reeve
- Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA
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Alqarni A, Hosmani J, Alassiri S, A. Alqahtani AM, Alfaifi A, Al Jazea SA. Association between psychosocial stressors and temporomandibular disorders in clinical dental students: a cross-sectional study. PeerJ 2025; 13:e19066. [PMID: 40034677 PMCID: PMC11874935 DOI: 10.7717/peerj.19066] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/13/2024] [Accepted: 02/07/2025] [Indexed: 03/05/2025] Open
Abstract
Background Temporomandibular disorders (TMDs) comprise an extensive spectrum of conditions that originate from diverse complex components of the temporomandibular joint. It is generally acknowledged that the biopsychosocial model is the preeminent framework for understanding the aetiology of TMDs. Anxiety, depression, and tension are among the psychological disorders that are commonly observed in dental students. The current research probed the propinquity of psychosocial stressors and TMD-like symptoms among clinical dental undergraduates residing in the Aseer region of Saudi Arabia, with a specific emphasis on the functional implications for their overall well-being. Methods This research included 89 clinical dentistry students who completed online questionnaires. The Patient-Reported Outcomes Measurement Information System (PROMIS) and Oral Health Impact Profile for Temporomandibular Disorders (OHIP-TMD) were used in these surveys. The trait-related attributes of TMD impacting the oral health profile were assessed using principal component analysis. Demographic factors for anxiety and TMD were examined using linear regression. The psychosocial and functional variables of the OHIP-TMD were compared with those of anxiety in the general regression system. Results The mean Oral Health Impact Profile (OHIP) value was 0.60, with a standard deviation of 0.61, indicating that the majority of respondents reported no or infrequent impacts on their oral health profile. Gender was a significant predictor of OHIP scores (P < 0.05), with females reporting higher scores. Despite these higher scores among females, the overall impact on oral health remained minimal for most respondents. The average PROMIS score was 11.12, with a standard deviation of 3.84. The PROMIS regression analysis on demographic variables yielded an R2 value of 0.092, F(4,78) = 5.691, with significance at P < 0.05. Gender emerged as the most significant predictor of PROMIS scores (P < 0.05), with females reporting higher scores. Once again, despite the higher scores among females, the overall impact remained low for most respondents. An analysis using a general linear model revealed a significant correlation between heightened anxiety levels and an increase in both psychosocial problems and physical function. Conclusion Although the majority of respondents reported minimal impacts on their oral health, anxiety remained a significant issue among female clinical dentistry students at the College of Dentistry in Aseer Province, Kingdom of Saudi Arabia. This anxiety was closely linked with psychological distress and impaired oral physical function. Beyond the realm of dental health, anxiety also had a profound effect on academic performance and student engagement. Therefore, addressing student anxiety is essential for enhancing overall well-being and academic success.
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Affiliation(s)
- Abdullah Alqarni
- Department of Diagnostic Science and Oral Biology, College of Dentistry, King Khalid University, Abha, Saudi Arabia
| | - Jagadish Hosmani
- Department of Diagnostic Science and Oral Biology, College of Dentistry, King Khalid University, Abha, Saudi Arabia
| | - Saeed Alassiri
- Department of Diagnostic Science and Oral Biology, College of Dentistry, King Khalid University, Abha, Saudi Arabia
| | - Ali Mosfer A. Alqahtani
- Department of Diagnostic Science and Oral Biology, College of Dentistry, King Khalid University, Abha, Saudi Arabia
| | - Ali Alfaifi
- Department of Prosthodontics, College of Dentistry, King Khalid University, Abha, Saudi Arabia
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Młyńczyk J, Abramowicz P, Bernacka-Kusznierko I, Konstantynowicz J. The quality of life assessment in children with juvenile idiopathic arthritis- comparison of PROMIS ® generic and disease-specific cut-off points: a pilot study. Rheumatol Int 2025; 45:61. [PMID: 39992379 DOI: 10.1007/s00296-025-05797-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/05/2024] [Accepted: 01/29/2025] [Indexed: 02/25/2025]
Abstract
OBJECTIVES Decreased quality of life (QoL) is a significant complication of most rheumatic conditions in adults, whereas data on health-related quality of life (HRQoL) in children with juvenile idiopathic arthritis (JIA) are limited. Patient-Reported Outcomes Measurement Information System® (PROMIS® ) instruments assessing quality of life (QoL) components can be scored using disease-specific severity thresholds. Our study aimed to compare the results of generic and one of the JIA-specific scorings regarding PROMIS® Pediatric Mobility, Pain Interference, and Fatigue questionnaires, introduce PROMIS® Pediatric Global Health 7 questionnaire as a valuable method to assess QoL specifically in patients with JIA and determine differences in self-reported QoL in juvenile idiopathic arthritis (JIA) patients and their healthy peers in the Polish population. METHODS In this single-center cross-sectional study, four self-reported questionnaires derived from the PROMIS® Pediatric Item Bank (Global Health, Pain Interference, Fatigue, Mobility) were administered to 52 patients with JIA (8-17 years; mean 13.2 ± 2.9; girls 59.6%) and 101 age-matched healthy controls. Questionnaires were scored based on generic or JIA-specific cut-off points. RESULTS Regardless of the domain (PROMIS® Pain Interference, Fatigue, or Mobility), JIA patients assigned by generic cut-off points to a more severe outcome were classified into milder outcomes when cut-off points for JIA were used. The usefulness of the PROMIS® Pediatric Global Health 7 questionnaire was evidenced in children with JIA. No significant differences were found in QoL assessment between children with JIA and healthy children; however, self-reported impaired mobility was more prevalent in patients with JIA. A negative correlation was found between overall QoL and the assessment of three domains: pain, fatigue, and mobility impairment. CONCLUSIONS Our study underscores the importance of JIA-specific scoring in clinical practice. While more research is needed to establish a single disease-specific scoring, our findings provide valuable insights into the negative influence of pain, fatigue, and mobility impairment on QoL in JIA. These results have the potential to significantly impact patient care and improve the health-related quality of life in children with JIA.
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Affiliation(s)
- Justyna Młyńczyk
- Department of Pediatrics, Rheumatology, Immunology, and Metabolic Bone Diseases, Medical University of Bialystok, Bialystok, Poland
| | - Paweł Abramowicz
- Department of Pediatrics, Rheumatology, Immunology, and Metabolic Bone Diseases, Medical University of Bialystok, Bialystok, Poland.
- Department of Pediatrics, Rheumatology, Immunology, and Metabolic Bone Diseases, Medical University of Bialystok, University Children's Clinical Hospital, Waszyngtona Street 17, Bialystok, 15-274, Poland.
| | - Izabela Bernacka-Kusznierko
- Department of Pediatrics, Rheumatology, Immunology, and Metabolic Bone Diseases, University Children's Clinical Hospital in Bialystok, Bialystok, Poland
| | - Jerzy Konstantynowicz
- Department of Pediatrics, Rheumatology, Immunology, and Metabolic Bone Diseases, Medical University of Bialystok, Bialystok, Poland.
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20
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Trigg A, Haberland C, Shalhoub H, Gerlinger C, Seitz C. Comparative performance of PROMIS Sleep Disturbance computerized adaptive testing algorithms and static short form in postmenopausal women. J Patient Rep Outcomes 2025; 9:18. [PMID: 39961968 PMCID: PMC11832987 DOI: 10.1186/s41687-025-00849-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/25/2024] [Accepted: 02/06/2025] [Indexed: 02/20/2025] Open
Abstract
BACKGROUND The Patient-Reported Outcomes Measurement Information System (PROMIS) Sleep Disturbance v1.0 item bank (27 items) measures sleep disturbances. Rather than the full item bank, an 8-item short form (PROMIS SD SF 8b) or computerized adaptive testing (CAT) can be used. This study compares the performance of the PROMIS SD SF 8b with two CAT algorithms in postmenopausal women. METHODS This is a secondary analysis of data collected for the original psychometric testing of the PROMIS Sleep Disturbance item bank, in a sub-sample of women aged ≥55. A graded response model (GRM) was fitted for the item bank, then simulations evaluated the performance of CAT algorithms and the short form, in terms of root mean square error (RMSE) versus the latent trait estimate derived from the full bank. Two CAT algorithms were tested: CAT1 (stop once standard error <0.3 or 12 items administered) and CAT2 (stop once 8 items administered). Convergent and divergent hypotheses for validity were tested through correlations with the Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS). Known-groups comparisons were made between those with and without self-reported sleep disorder. RESULTS A sample of 337 women was analyzed. Unidimensionality and item-level fit to the GRM was supported; however, the local independence assumption was violated. The CAT1 algorithm showed 4.18 items on average, with a minor decrease in performance (higher RMSE value) compared to CAT2 or the PROMIS SD SF 8b. Administering 8 items adaptively (CAT2) compared to fixed (PROMIS SD SF 8b) performed similarly (RMSE difference = 0.001). Reliability exceeded 0.90 across most of the latent trait for all approaches. Correlations with the PSQI and ESS were largely as hypothesized, with minor differences in coefficient values between the approaches (all within 0.05). Women reporting a sleep disorder had greater sleep disturbance than those who did not (p < 0.001 for all). CONCLUSIONS The results of this study support using the PROMIS Sleep Disturbance item bank in postmenopausal women. The choice of PROMIS SD SF 8b versus CAT can largely be driven by practical reasons (respondent burden and operational complexity) rather than concerns of differential reliability and validity.
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Affiliation(s)
- Andrew Trigg
- Clinical Statistics and Analytics, Bayer plc, Reading, UK.
| | | | - Huda Shalhoub
- Clinical Customer Centricity, Bayer AG, Berlin, Germany
| | - Christoph Gerlinger
- Clinical Statistics and Analytics, Bayer AG, Berlin, Germany
- Gynecology, Obstetrics and Reproductive Medicine, University Medical School of Saarland, Homburg, Saar, Germany
| | - Christian Seitz
- Clinical Development and Operations, Bayer AG, Berlin, Germany
- Institute of Clinical Pharmacology and Toxicology, Charité, Berlin, Germany
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21
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Horie T, Kurisu K, Inada S, Kawahara K, Matsuyama Y, Kikuchi H, Yamamoto Y, Yamauchi T, Yoshiuchi K. Development of computer adaptive tests to assess the psychological status of individuals with an eating disorder or type 2 diabetes. Biopsychosoc Med 2025; 19:2. [PMID: 39953552 PMCID: PMC11827128 DOI: 10.1186/s13030-025-00325-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/17/2024] [Accepted: 01/31/2025] [Indexed: 02/17/2025] Open
Abstract
BACKGROUND Individuals with type 2 diabetes and eating disorders must change their eating behaviors, which are often influenced by psychological factors like depression and anxiety. To efficiently assess daily psychological status, the present study aimed to develop computerized adaptive tests (CAT) based on item response theory (IRT). METHODS Individuals with depression, anxiety disorders, eating disorders, type 2 diabetes, and healthy persons participated in the study. Participants completed six questionnaires, including momentary and most recent one-week depression, anxiety, and positive affect. We selected items meeting the IRT assumptions, applied a graded response model, and conducted CAT simulations. RESULTS Across all six questionnaires, the CAT simulations used a smaller number of items and exhibited substantial Pearson's correlation coefficients exceeding 0.95 between simulated and full item-set mood status estimates. These estimated mood scores demonstrated satisfactory concurrent validity with the Hospital Anxiety and Depression Scale and sufficient discriminant validity between the clinical group and healthy controls. CONCLUSION These findings suggest that these scales offer efficient measurement of the mood status of individuals with an eating disorder or type 2 diabetes.
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Affiliation(s)
- Takeshi Horie
- Department of Stress Sciences and Psychosomatic Medicine, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
| | - Ken Kurisu
- Department of Stress Sciences and Psychosomatic Medicine, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
| | - Shuji Inada
- Department of Stress Sciences and Psychosomatic Medicine, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
- Department of Psychosomatic Medicine, Saitama Cancer Center, Saitama, Japan
| | | | - Yutaka Matsuyama
- Department of Biostatistics, School of Public Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
| | - Hiroe Kikuchi
- Department of Psychosomatic Medicine, National Center for Global Health and Medicine Hospital, Tokyo, Japan
| | - Yoshiharu Yamamoto
- Educational Physiology Laboratory, Graduate School of Education, The University of Tokyo, Tokyo, Japan
| | - Toshimasa Yamauchi
- Department of Diabetes and Metabolic Diseases, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
| | - Kazuhiro Yoshiuchi
- Department of Stress Sciences and Psychosomatic Medicine, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
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McCarrier KP, Hassan M, Yuen DW, Tsai JH, Touba N, Mange KC. Content Validation of the QOL-B-RD and PROMIS-F SF-7a to Measure Respiratory and Fatigue Symptoms of MAC Lung Disease. Adv Ther 2025; 42:935-976. [PMID: 39680310 PMCID: PMC11787195 DOI: 10.1007/s12325-024-03064-9] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/13/2024] [Accepted: 10/31/2024] [Indexed: 12/17/2024]
Abstract
INTRODUCTION The Quality of Life-Bronchiectasis (QOL-B) questionnaire and Patient Reported Outcome Measurement Information System Short Form v1.0-Fatigue 7a (PROMIS-F SF-7a) have the potential to measure respiratory and fatigue symptoms, respectively, in patients with Mycobacterium avium complex (MAC) lung disease but have not yet been evaluated for content validity in this population. METHODS Semi-structured qualitative interviews were conducted in United States patients with a current MAC lung disease diagnosis. Concept elicitation (CE) interviews were conducted (n = 25 participants) to identify key respiratory and fatigue symptoms expressed as important and relevant to patients with MAC lung disease and to evaluate the appropriateness of the QOL-B and PROMIS-F SF-7a to measure these symptoms. Cognitive interviews (CIs) were subsequently conducted (n = 20 participants) to evaluate the relevance, comprehensibility, and appropriateness of the QOL-B respiratory domain (QOL-B-RD) and PROMIS-F SF-7a. All interviews were recorded, transcribed, and coded for qualitative content analysis. RESULTS The most important or relevant respiratory symptom concepts to CE interview participants were "cough," "shortness of breath during activity," and "mucus/phlegm." The most important or relevant fatigue symptom concepts were "tiredness," "lack of energy," and "tire easily/low stamina." These symptoms are covered by existing items in the QOL-B-RD and PROMIS-F SF-7a. Cognitive interview participants' feedback confirmed the item content, response options, concept attributes, and recall period for each instrument were effective, relevant, and meaningful to most patients with MAC lung disease. Based on Wave 1 findings, the QOL-B instructions were revised for the Wave 2 interviews, where the text referencing "bronchiectasis" was replaced with "your lung condition." Participant feedback in Wave 2 confirmed the revised instruction wording was easily understood and appropriate. CONCLUSIONS The study results support the content validity of the QOL-B-RD and PROMIS-F SF-7a, which were shown to be relevant and appropriate to evaluate respiratory and fatigue symptoms, respectively, in patients with MAC lung disease.
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Affiliation(s)
| | - Mariam Hassan
- Insmed Incorporated, 700 US Highway 202/206, Bridgewater, NJ, 08807, USA.
| | - Dayton W Yuen
- Insmed Incorporated, 700 US Highway 202/206, Bridgewater, NJ, 08807, USA
| | - Jui-Hua Tsai
- OPEN Health Evidence and Access, Bethesda, MD, USA
| | - Nancy Touba
- OPEN Health Evidence and Access, Bethesda, MD, USA
| | - Kevin C Mange
- Insmed Incorporated, 700 US Highway 202/206, Bridgewater, NJ, 08807, USA
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Gao X, Chen Y. Comparison of Resilience Measures in Chinese Adolescents: Based on Item Response Theory. J Pers Assess 2025:1-10. [PMID: 39882828 DOI: 10.1080/00223891.2025.2454012] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/17/2024] [Accepted: 12/19/2024] [Indexed: 01/31/2025]
Abstract
Resilience is an important ability that helps adolescents resist stress from everyday life. While resilience has been measured in many ways, no measures have been developed specifically for the adolescent population. This study analyzed three popular resilience questionnaires, evaluated their psychometric properties using item response theory and explored their applicability. Graded response model (GRM) was used to compare the psychometric properties of the three questionnaires. The results of the item response theory analysis showed that the CD-RISC-10 provided more average item information (AII) than the CD-RISC and the ER89 in the interval -4 < θ < +2.9 SD. At more than +2.9 SD, CD-RISC has higher AII. We also tested the external validity of the three questionnaires by calculating the correlation of the three questionnaires with the total and dimension scores of the Adolescent Psychological Adaptability Scale (APAS). The correlation coefficient ranged between 0.30 and 0.58. The results also suggest that the CD-RISC-10 can more accurately screen participants across a wide range of resilience levels. The CD-RISC is also suitable for measuring very high levels of resilience.
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Affiliation(s)
- Xuliang Gao
- School of Psychology, Guizhou Normal University, Guiyang, China
| | - Yi Chen
- School of Psychology, Guizhou Normal University, Guiyang, China
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Sokol OE, Biggs EE, Berger AS, Simons LE, Bhandari RP. The Relationship Between Fatigue, Pain Interference, Pain-Related Distress, and Avoidance in Pediatric Hypermobile Ehlers-Danlos Syndrome. CHILDREN (BASEL, SWITZERLAND) 2025; 12:170. [PMID: 40003271 PMCID: PMC11854175 DOI: 10.3390/children12020170] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 12/11/2024] [Revised: 01/23/2025] [Accepted: 01/27/2025] [Indexed: 02/27/2025]
Abstract
BACKGROUND/OBJECTIVES Fatigue is a known predictor of disability and reduced quality of life in youth with hypermobility and chronic pain in general. Given the added relationship between chronic fatigue and connective tissue disorders, including hypermobile Ehlers-Danlos Syndrome (hEDS), this study aims to investigate the comparative role of fatigue on important predictors of outcomes for youth with and without hEDS who have chronic pain. METHODS In this retrospective study, pediatric patients with chronic pain diagnosed with hEDS (n = 100) were compared to an age- and sex-matched group of youth with chronic pain without diagnosed hypermobility (n = 100). Participants completed measures of pain-related distress (PCS-C), avoidance (FOPQ-A), and pediatric PROMIS measures for fatigue, anxiety, and pain interference. Data were analyzed using chi-square tests, t-tests, and ANCOVAs in RStudio. RESULTS Fatigue scores were higher and clinically elevated fatigue was more prevalent in those with hEDS than in matched chronic pain peers. Fatigue was significantly positively related to pain interference, avoidance, and pain-related distress in youth with and without hEDS. CONCLUSIONS The current study supports the need for multidisciplinary treatment and rehabilitation for pediatric chronic pain and hypermobility and suggests that fatigue may be an important factor to consider when treating youth with hypermobility.
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Affiliation(s)
- Olivia E. Sokol
- Department of Anesthesiology, Perioperative and Pain Medicine, School of Medicine, Stanford University, Stanford, CA 94305, USA; (E.E.B.); (A.S.B.); (L.E.S.); (R.P.B.)
| | - Emma E. Biggs
- Department of Anesthesiology, Perioperative and Pain Medicine, School of Medicine, Stanford University, Stanford, CA 94305, USA; (E.E.B.); (A.S.B.); (L.E.S.); (R.P.B.)
| | - Ardin S. Berger
- Department of Anesthesiology, Perioperative and Pain Medicine, School of Medicine, Stanford University, Stanford, CA 94305, USA; (E.E.B.); (A.S.B.); (L.E.S.); (R.P.B.)
- Comfort Clinic, Berkeley, CA 94705, USA
| | - Laura E. Simons
- Department of Anesthesiology, Perioperative and Pain Medicine, School of Medicine, Stanford University, Stanford, CA 94305, USA; (E.E.B.); (A.S.B.); (L.E.S.); (R.P.B.)
| | - Rashmi P. Bhandari
- Department of Anesthesiology, Perioperative and Pain Medicine, School of Medicine, Stanford University, Stanford, CA 94305, USA; (E.E.B.); (A.S.B.); (L.E.S.); (R.P.B.)
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Mikkonen J, Martela F, Holopainen R, Ekström K, Goubert L, Leinonen V, Selander T, Airaksinen O, Neblett R. Well-being in pain questionnaire: A novel, reliable, and valid tool for assessment of the personal well-being in individuals with chronic low back pain. Scand J Pain 2025; 25:sjpain-2024-0067. [PMID: 40195787 DOI: 10.1515/sjpain-2024-0067] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/06/2024] [Accepted: 03/18/2025] [Indexed: 04/09/2025]
Abstract
BACKGROUND Well-being is closely related to health, recovery, and longevity. Chronic musculoskeletal pain (CMP) is a major health challenge in the general population, which can have a negative effect on subjective well-being. The ability to identify patients' well-being protective factors, including psychological, social, and lifestyle components, can help guide the therapeutic process in the management of CMP. Recognizing the absence of a dedicated well-being questionnaire, tailored specifically for CMP populations, an 11-item well-being in pain questionnaire (WPQ) was developed. OBJECTIVES The objectives were to develop a valid and reliable patient-reported measure of personal pain-specific well-being protective factors and to evaluate its psychometric properties, including (i) internal consistency; (ii) known-group validity between subjects with chronic low back pain (CLBP) and healthy pain-free controls; (iii) convergent validity between the WPQ and measures of health-related quality of life, catastrophizing, sleep quality, symptoms of central sensitization, and anxiety; and (iv) structural validity with exploratory factor analysis. DESIGN This is a cross-sectional validation study. METHODS After reviewing previous CMP and well-being literature, the novel WPQ items were constructed by expert consensus and target population feedback. The psychometric properties of the WPQ were evaluated in a sample of 145 participants, including 92 subjects with CLBP and 53 pain-free controls. RESULTS Feedback from a preliminary group of CMP patients about the relevance, content, and usability of the test items was positive. Internal consistency showed acceptable results (α = 0.89). The assessment of convergent validity showed moderate correlations (≤0.4 or ≥-0.4.) with well-established subject-reported outcome measures. The assessment of structural validity yielded a one-factor solution, supporting the unidimensionality of the WPQ. CONCLUSIONS The psychometric results provided evidence of acceptable reliability and validity of the WPQ. Further research is needed to determine the usability of the WPQ as an assessment and outcome tool in the comprehensive management of subjects with CMP.
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Affiliation(s)
- Jani Mikkonen
- Private Practice, Mikonkatu 11, 00100, Helsinki, Finland
- Department of Surgery (Incl. Physiatry), Institute of Clinical Medicine, University of Eastern Finland, 70211, Kuopio, Finland
| | - Frank Martela
- Department of Industrial Engineering and Management, Aalto University, Espoo, Finland
| | - Riikka Holopainen
- Faculty of Sport and Health Sciences, University of Jyväskylä, Jyväskylä, Finland
| | | | - Liesbet Goubert
- Department of Experimental-Clinical and Health Psychology, Ghent University, 9000, Ghent, Belgium
| | - Ville Leinonen
- Department of Neurosurgery, Institute of Clinical Medicine, University of Eastern Finland, 70211, Kuopio, Finland
- Department of Neurosurgery, Kuopio University Hospital, Kuopio, Finland
| | - Tuomas Selander
- Science Service Center, Kuopio University Hospital, Kuopio, Finland
| | - Olavi Airaksinen
- Department of Surgery (Incl. Physiatry), Institute of Clinical Medicine, University of Eastern Finland, 70211, Kuopio, Finland
| | - Randy Neblett
- PRIDE Research Foundation, Dallas, TX, United States of America
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Mercuri C, Giordano V, Bosco V, Serra N, Spagnuolo R, Nocerino R, Rea T, Colaci C, Guillari A, Doldo P, Simeone S. Impact of Nursing Interventions via Telephone and Email on the Quality of Life of Patients with Inflammatory Bowel Disease: Preliminary Results of a Comparative Observational Study. Healthcare (Basel) 2024; 12:2538. [PMID: 39765967 PMCID: PMC11675699 DOI: 10.3390/healthcare12242538] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/26/2024] [Revised: 12/10/2024] [Accepted: 12/13/2024] [Indexed: 01/11/2025] Open
Abstract
BACKGROUND Inflammatory bowel disease (IBD), encompassing ulcerative colitis and Crohn's disease, is a heterogeneous chronic condition characterized by periods of relapse and remission. Ulcerative colitis involves inflammation of the colon and rectum mucosa, while Crohn's disease causes deeper, transmural inflammation affecting all four gut layers from the mouth to the anus and can lead to complications such as fistulation. IBD significantly impacts patients' physical and psychological well-being, thus reducing their quality of life (QoL). We aimed to evaluate the effectiveness of nursing intervention facilitated through telephone and email support in improving the quality of life (QoL) of Inflammatory Bowel Disease (IBD) patients. METHODS A pilot comparative observational design with pre-test and post-test assessments was employed, involving 50 participants assigned to either an intervention group (Group A, n = 26) or a control group (Group B, n = 24). Group A received regular telephone consultations and prompt email responses from trained nurses; Group B received standard care. Data were collected at baseline and six months post-intervention (T1) using the Patient-Reported Outcomes Measurement Information System (PROMIS®) and Pittsburgh Sleep Quality Index. RESULTS Group A showed significant improvements in anxiety, depression, fatigue, and sleep quality, with p-values indicating the significance of these findings. CONCLUSIONS Tailored nursing support via remote communication significantly benefits IBD patients by alleviating psychological distress and enhancing their overall well-being, underscoring the importance of integrating such interventions into standard IBD care practices.
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Affiliation(s)
- Caterina Mercuri
- Department of Clinical and Experimental Medicine, University of Catanzaro MagnaGraecia, 88100 Catanzaro, Italy; (C.M.); (C.C.); (P.D.); (S.S.)
| | | | - Vincenzo Bosco
- Department of Medical and Surgical Sciences, University Hospital Mater Domini, Magna Graecia University, 88100 Catanzaro, Italy;
| | - Nicola Serra
- Department of Neuroscience, Reproductive Sciences and Dentistry-Audiology Section, University of Naples Federico II, Via Pansini 5, 80131 Naples, Italy;
| | - Rocco Spagnuolo
- Department of Health Sciences, University “Magna Graecia”, 88100 Catanzaro, Italy;
| | - Rita Nocerino
- Department of Translational Medical Science, University of Naples “Federico II”, 80131 Naples, Italy;
- ImmunoNutritionLab at CEINGE—Advanced Biotechnologies, University of Naples “Federico II”, 80131 Naples, Italy
| | - Teresa Rea
- Department of Public Health, University of Naples “Federico II”, 80131 Naples, Italy;
| | - Carmen Colaci
- Department of Clinical and Experimental Medicine, University of Catanzaro MagnaGraecia, 88100 Catanzaro, Italy; (C.M.); (C.C.); (P.D.); (S.S.)
| | - Assunta Guillari
- Department of Translational Medical Science, University of Naples “Federico II”, 80131 Naples, Italy;
| | - Patrizia Doldo
- Department of Clinical and Experimental Medicine, University of Catanzaro MagnaGraecia, 88100 Catanzaro, Italy; (C.M.); (C.C.); (P.D.); (S.S.)
| | - Silvio Simeone
- Department of Clinical and Experimental Medicine, University of Catanzaro MagnaGraecia, 88100 Catanzaro, Italy; (C.M.); (C.C.); (P.D.); (S.S.)
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Obbarius A, Hartmann C, Liegl G, Fischer F, Rose M. The Reha-Toolbox Project: Linking Item Subsets of 3 Established Rehabilitation PROMs to 9 Domains of the Patient-Reported Outcomes Measurement Information System (PROMIS). Arch Phys Med Rehabil 2024:S0003-9993(24)01404-7. [PMID: 39694402 DOI: 10.1016/j.apmr.2024.12.007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/08/2024] [Revised: 11/04/2024] [Accepted: 12/05/2024] [Indexed: 12/20/2024]
Abstract
OBJECTIVE The overarching goal of the patient-reported outcomes measurement information system (PROMIS) is to standardize patient-reported outcomes across settings and health conditions globally. Following this purpose, the Reha-Toolbox study aimed to link item subsets of the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0), the Indicators of Rehabilitation Status (IRES-3), and the Hamburg Modules for the Assessment of Psychosocial Health (HEALTH-49) to the standardized metrics provided by PROMIS. DESIGN Cross-sectional, single-group linking study. SETTING Online survey. PARTICIPANTS Experts (N=5) mapped items from the 3 rehabilitation measures to PROMIS scales. Data were collected online from a general population sample (N=1000). Items from the rehabilitation measures and their corresponding PROMIS short forms were administered to facilitate item linkage. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES WHODAS 2.0, IRES-3, HEALTH-49, and PROMIS scales. RESULTS Overall, 96 of 171 outcome items (56%) from the legacy measures and 1 additional IRES-3 item were mapped to 9 PROMIS domains, including pain interference, physical function, dyspnea, fatigue, depression, anxiety, cognitive function, ability to participate in social roles and activities, and satisfaction with participation in social roles and activities. Ninety-five items fulfilled the linking assumptions of construct similarity, unidimensionality, and measurement invariance. The legacy items were successfully calibrated on the corresponding PROMIS metrics using graded-response models. The range and precision of the measures varied, depending on the number of items in each domain. Domains that were assessed with 4 or more items achieved sufficient reliability for group-based analyses. Crosswalk tables were created for each measure and domain. We discussed the reasons for and implications of the fact that the rehabilitation measures were only partially linked to the PROMIS metrics. CONCLUSIONS The study achieved robust linking between subsets of WHODAS 2.0, IRES-3, HEALTH-49 items, and 9 PROMIS scales.
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Affiliation(s)
- Alexander Obbarius
- Center for Patient Centered Outcomes Research, Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Berlin, Germany; Dornsife Center for Self-Report Science, University of Southern California, Los Angeles, CA.
| | - Claudia Hartmann
- Center for Patient Centered Outcomes Research, Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Berlin, Germany
| | - Gregor Liegl
- Center for Patient Centered Outcomes Research, Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Berlin, Germany
| | - Felix Fischer
- Center for Patient Centered Outcomes Research, Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Berlin, Germany
| | - Matthias Rose
- Center for Patient Centered Outcomes Research, Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Berlin, Germany; Quantitative Health Sciences, Outcomes Measurement Science, University of Massachusetts Medical School, Worcester, MA
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Gould CE, Carlson C, Wetherell JL, Goldstein MK, Anker L, Beaudreau SA. Brief Video-Delivered Intervention to Reduce Anxiety and Improve Functioning in Older Veterans: Pilot Randomized Controlled Trial. JMIR Aging 2024; 7:e56959. [PMID: 39652863 DOI: 10.2196/56959] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/01/2024] [Revised: 10/24/2024] [Accepted: 11/11/2024] [Indexed: 12/12/2024] Open
Abstract
BACKGROUND Older veterans with anxiety disorders encounter multiple barriers to receiving mental health services, including transportation difficulties, physical limitations, and limited access to providers trained to work with older persons. To address both accessibility and the shortage of available providers, evidence-based treatments that can be delivered via guided self-management modalities are a potential solution. OBJECTIVE This study aims to determine the feasibility and acceptability of a randomized controlled trial of 2 guided self-management interventions. This study compared the treatment effects of these 2 interventions (relaxation and health psychoeducation) on anxiety symptom severity and functioning in older veterans with anxiety disorders. Our exploratory aims examined factors related to home practices and treatment engagement and perceptions of the practices. METHODS Participants were randomized to one of two video-delivered interventions: (1) Breathing, Relaxation, and Education for Anxiety Treatment in the Home Environment (BREATHE)-breathing and progressive relaxation or (2) Healthy Living for Reduced Anxiety-psychoeducation about lifestyle changes. Telephone coaching calls were conducted weekly. Measures of anxiety, depression, and functioning were obtained at baseline, week 4 (end of treatment), week 8, and week 12. Participants completed a semistructured interview at week 12. Analyses included descriptive statistics to summarize measures of intervention engagement; mixed-effects models to characterize symptom change, and qualitative analyses. RESULTS Overall, 56 participants (n=48, 86% men; n=23, 41% from ethnic or racial minority groups; mean age 71.36, SD 6.19 y) were randomized. No difference in retention between study arms was found. The Healthy Living group (29/56, 52%) completed significantly more lessons (mean 3.68, SD 0.86) than the BREATHE group (27/56, 48%; mean 2.85, SD 1.43; t53=2.60; P=.01) but did not differ in completion of coaching calls. In the BREATHE group, greater baseline anxiety scores (r=-0.41; P=.03) and greater severity of medical comorbidity (r=-0.50; P=.009) were associated with fewer completed practices. There was no effect of intervention on change in total anxiety scores or functioning. For specific anxiety subtypes, Healthy Living produced a greater decline in somatic anxiety compared with BREATHE. Qualitative analyses found barriers to practicing, including difficulty setting time aside to practice, forgetting, or having other activities that interfered with BREATHE practices. Some participants described adapting their practice routine to fit their daily lives; some also used relaxation skills in everyday situations. CONCLUSIONS These findings suggest that a larger randomized controlled trial of guided self-management approaches to treating late-life anxiety is feasible; however, BREATHE was not effective in reducing anxiety compared with Healthy Living. Possible contributing factors may have been the reliance on a single technique. Progressive relaxation was reported to be enjoyable for most participants, but maintaining home practices was challenging. Those with milder anxiety severity and fewer health problems were better able to adhere to practices. TRIAL REGISTRATION ClinicalTrials.gov NCT02400723; https://clinicaltrials.gov/study/NCT02400723.
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Affiliation(s)
- Christine E Gould
- Geriatric Research, Education and Clinical Center, VA Palo Alto Health Care System, Palo Alto, CA, United States
- Department of Psychiatry & Behavioral Sciences, Stanford University School of Medicine, Stanford, CA, United States
| | - Chalise Carlson
- Geriatric Research, Education and Clinical Center, VA Palo Alto Health Care System, Palo Alto, CA, United States
| | - Julie L Wetherell
- Mental Health Impact Unit 3, VA San Diego Healthcare System, San Diego, CA, United States
- Department of Psychiatry, University of California, San Diego, San Diego, CA, United States
| | - Mary K Goldstein
- Department of Health Policy, Stanford University School of Medicine, Stanford, CA, United States
| | - Lauren Anker
- Department of Psychiatry & Behavioral Sciences, Stanford University School of Medicine, Stanford, CA, United States
- Sierra Pacific Mental Illness Research, Education, and Clinical Center, VA Palo Alto Health Care System, Palo Alto, CA, United States
| | - Sherry A Beaudreau
- Department of Psychiatry & Behavioral Sciences, Stanford University School of Medicine, Stanford, CA, United States
- Sierra Pacific Mental Illness Research, Education, and Clinical Center, VA Palo Alto Health Care System, Palo Alto, CA, United States
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Mundy LR, Klassen AF, Pusic AL, deJong T, Hollenbeck ST, Gage MJ. The LIMB-Q: Reliability and Validity of a Novel Patient-Reported Outcome Measure for Patients with Lower Extremity Trauma. Plast Reconstr Surg 2024; 154:1332-1340. [PMID: 38232226 DOI: 10.1097/prs.0000000000011293] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/19/2024]
Abstract
BACKGROUND The LIMB-Q is a novel patient-reported outcome measure for patients with lower extremity trauma. The aim of this study was to perform a psychometric validation of the LIMB-Q based on the Rasch measurement theory. METHODS An international, multisite convenience sample of patients with lower extremity traumatic injuries distal to the midfemur was recruited from clinical sites in the United States and the Netherlands and online platforms (in English; Trauma Survivors Network patient support group and the Prolific academic research platform). A cross-sectional survey of the LIMB-Q was conducted with test-retest reliability analysis performed 1 to 2 weeks after initial completion in a subgroup of patients. RESULTS The LIMB-Q was field-tested in 713 patients. The mean age was 41 years (SD, 17 years; range, 18 to 85 years), the mean time from injury was 7 years (SD, 9 years; range, 0 to 58 years), and there were various injury and treatment characteristics (39% fracture surgery only, 38% flap or graft, 13% amputation, 10% amputation and flap or graft). Out of 382 items tested, 164 were retained across 16 scales. Reliability was demonstrated with person separation index values of 0.80 or greater in 14 scales (0.78 to 0.79 in the remaining 2 scales), Cronbach alpha values 0.83 or greater, and intraclass correlation coefficient values 0.70 or greater. Each scale was unidimensional, measurement invariance was confirmed across clinical and demographic factors, test-retest analysis showed adequate reliability, and construct validity was demonstrated. CONCLUSION The LIMB-Q is a patient-reported outcome measure with 16 independently functioning scales (6 to 15 items per scale) developed and validated specifically for patients with lower extremity trauma with fractures, reconstruction, or amputation.
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Affiliation(s)
- Lily R Mundy
- From the Department of Plastic and Reconstructive Surgery, Johns Hopkins School of Medicine
| | | | - Andrea L Pusic
- Division of Plastic Surgery, Department of Surgery
- Patient Reported Outcomes, Value and Experience Center, Brigham and Women's Hospital
| | - Tim deJong
- Department of Plastic Surgery, Radboud University Medical Center
- Department of Plastic Surgery, Erasmus Medical Center
| | | | - Mark J Gage
- Section of Orthopaedic Trauma, Department of Orthopaedic Surgery, Duke University
- Division of Orthopaedic Trauma, Department of Orthopaedic Surgery, R Adams Cowley Shock Trauma Center, University of Maryland
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Zheng Y, Lin X, Huang Y, Laureys S, Di H. Rasch Analysis of the Chinese Version of the Nociception Coma Scale-Revised in Patients with Prolonged Disorders of Consciousness. Clin Rehabil 2024; 38:1645-1657. [PMID: 39275814 DOI: 10.1177/02692155241280524] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 09/16/2024]
Abstract
OBJECTIVES The aim of this study was to analyze the Chinese version of the Nociception Coma Scale-Revised in patients with prolonged disorders of consciousness within the framework of Rasch modeling, including investigating the invariance of total scores across different etiologies of disorders of consciousness. DESIGN Prospective psychometric study. PARTICIPANTS Patients with prolonged disorders of consciousness from the Rehabilitation and Neurology units in hospital. INTERVENTIONS None. MAIN OUTCOME MEASURE The Nociception Coma Scale-Revised was undertaken by trained raters and the Coma Recovery Scale-Revised was used to assess patients' consciousness. The psychometric properties within the Rasch model including item-person targeting, reliability and separation, item fit, unidimensionality, and differential item functioning were assessed. RESULTS 84 patients with prolonged disorders of consciousness (mean age 53 years; mean injury 5 months; 42 with Minimally Conscious State and 42 with Unresponsive Wakefulness Syndrome) of 252 observations were enrolled in the study. Through the procedure of repeated assessment and differential item function, a lower item bias Rasch set was purified. The Rasch model assumptions were examined and met, with item reliability and validity meeting the recommended threshold. CONCLUSIONS The Chinese version of the Nociception Coma Scale-Revised demonstrated unidimensionality, good reliability and separation, and good item fit, but dissatisfied person fit and item-person targeting. The verbal subscale showed a notable discrepancy between person responses and the difficulty of the items, suggesting limited clinical significance.
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Affiliation(s)
- Yuhang Zheng
- International Unresponsive Wakefulness Syndrome and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China
| | - Xinyou Lin
- International Unresponsive Wakefulness Syndrome and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China
| | - Yuehong Huang
- International Unresponsive Wakefulness Syndrome and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China
| | - Steven Laureys
- International Unresponsive Wakefulness Syndrome and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China
- Coma Science Group, GIGA Consciousness, University of Liège, Liège, Belgium
- CERVO Brain Research Centre, Laval University, Laval, QC, Canada
| | - Haibo Di
- International Unresponsive Wakefulness Syndrome and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China
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van Tuijl P, Verboon P, van Lankveld J. Initial development and validation of item banks to measure problematic hypersexuality. OPEN RESEARCH EUROPE 2024; 3:129. [PMID: 39118807 PMCID: PMC11306953 DOI: 10.12688/openreseurope.16131.2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Accepted: 10/15/2024] [Indexed: 08/10/2024]
Abstract
Background Problematic Hypersexuality (PH) is defined as a distress caused by hypersexuality, to the extent that seeking treatment is considered. PH was previously measured with instruments stemming from different perspectives on problems related to hypersexuality. These instruments might best be analyzed in unison to discover the most optimal set of characteristics to measure PH. Methods A total of 58 items were investigated with Item Response Theory (IRT). We included 1211 participants (592 women, 618 men, 1 other) from a representative Dutch general population sample of 18 years or older. In addition, 371 participants (116 women, 253 men, 2 other) in a web-based survey who sought information on their current level of PH were included. This latter group was divided into those that did or did not consider treatment and group differences in item averages were assessed. Results After item selection, 26 out of 58 items were retained and divided in two scales: Emotion Dysregulation-PH - 9 items representing the distressing emotional patterns coinciding with hypersexual preoccupation - and Negative Effects-PH - 17 items representing the negative consequences of patterns of hypersexual thoughts and behavior. Assumptions for IRT analyses were met (unidimensionality, local independence and monotonicity). After an IRT graded response model was fit, the scales showed sufficient reliability for the target population of hypersexual individuals. In the general population the scales showed large floor effects and were less reliable. Conclusions With this study a first step is taken in validating two complementary item banks to measure PH. Further development of the item banks should include the investigation of responsiveness. New items should be constructed to assess less-explored areas of PH and improve differentiating power of the scales. This study showed that diagnostic accuracy for PH is currently difficult to attain with a survey, even when using an extended item set representing the most unique characteristics of PH.
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Affiliation(s)
- Piet van Tuijl
- Psychology, Open University of The Netherlands, Heerlen, Limburg, The Netherlands
| | - Peter Verboon
- Psychology, Open University of The Netherlands, Heerlen, Limburg, The Netherlands
| | - Jacques van Lankveld
- Psychology, Open University of The Netherlands, Heerlen, Limburg, The Netherlands
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Yang Z, Luo N, Hong Y. The effect of positive mental well-being on patient reported outcome (PRO): finding from a cross-sectional multi-disease study in China. Health Qual Life Outcomes 2024; 22:100. [PMID: 39550577 PMCID: PMC11568534 DOI: 10.1186/s12955-024-02314-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/24/2024] [Accepted: 10/31/2024] [Indexed: 11/18/2024] Open
Abstract
PURPOSE This study aims to investigate the potential impact of positive mental well-being on responses of patient-reported outcome measures (PROMs), such as EQ-5D-5L. METHODS This study utilized the data collected in a cross-sectional study in a sample consisted of individuals with different health conditions. Spearman's rank correlations were employed to investigate the relationship between the responses to the dimensions of EQ-5D-5L and the Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS). A binary logistic regression analysis and ordered logistic multivariable regression were utilized to examine how SWEMWBS scores could impact the responses to EQ-5D-5L dimensions, while controlling for variables such as age, gender, education level, health conditions, caring experience, and data collection methods. The effects of SWEMWBS on EQ-VAS and utility values were also examined. RESULTS One thousand nine individuals participated in the survey. Spearman's rank correlation revealed that all dimensions of EQ-5D-5L, except for the anxiety/depression dimension, exhibited weak correlations with all dimensions of SWEMWBS. Binary logistic regression and ordered logistic multivariable regression indicated that age, SWEMWBS scores, gender, health conditions, data collection methods, and caring experience significantly influenced the likelihood of reporting problems in EQ-5D-5L responses. Notably, better SWEMWBS outcomes increased the likelihood of reporting no or fewer problems across all EQ-5D-5L dimensions. Spearman's rank correlation suggested a moderate or strong positive correlation between SWEMWBS scores and EQ-5D-5L utility values and EQ-VAS. The results of multiple linear regression analysis revealed that SWEMWBS scores, health conditions, caring experience, and data collection methods were significantly associated with EQ-5D utility values and EQ-VAS. CONCLUSIONS Individuals with better positive mental well-being results are more likely to report better results in PROMs like EQ-5D-5L. Future study is needed to understand the thought process and to explore strategies to cope with the response heterogeneity that led by the status of mental well-being.
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Affiliation(s)
- Zhihao Yang
- Health Services Management School, Guizhou Medical University, Guiyang, 550002, People's Republic of China
- Medical Psychiatry and Psychotherapy, Erasmus Medical Center, Rotterdam, 3015CN , the Netherlands
| | - Nan Luo
- Saw Swee Hock School of Public Health, National University of Singapore, Singapore, Singapore
| | - Yanming Hong
- The Third Affiliated Hospital of Sun Yat-Sen University, The Third Affiliated Hospital of Sun Yat-Sen University, 600, Tianhe RoadTianhe District, Guangzhou, 510630, People's Republic of China.
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Goree JH, Payakachat N, Byers L, Smith GL, Shah JR, Stephens KE. Impact of psychosocial factors on the success of neuromodulation treatment for patients with persistent pain. Reg Anesth Pain Med 2024; 49:793-799. [PMID: 38388016 PMCID: PMC11671871 DOI: 10.1136/rapm-2023-104962] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/24/2023] [Accepted: 12/10/2023] [Indexed: 02/24/2024]
Abstract
INTRODUCTION Significant interindividual variability in spinal cord stimulation (SCS) outcomes exists. Due to its high cost and risks of complications, criteria to guide patient selection for SCS trials and their outcomes would be helpful. With increased focus on the use of patient-reported outcomes to improve care, we aim to evaluate the National Institute of Health Patient Reported Outcome Measurement Information System measures for an association with successful SCS trials in patients with persistent pain. METHODS Our prospective, observational study enrolled 60 patients with persistent pain who underwent an SCS trial. Patients completed demographic and Patient Reported Outcome Measurement Information System computer adaptive test (PROMIS CAT) assessments to measure self-reported pain interference, depression, anxiety, physical functioning, and sleep disturbance at the time they presented for placement of their trial device. RESULTS Of the 58 patients who underwent successful electrode placement, 11 had an unsuccessful trial. There were no differences in patient demographics between patients with a successful and an unsuccessful trial. Patients who had a successful SCS trial reported lower pre-trial levels of anxiety, depression, and sleep disturbance and decreased post-trial levels of depression, sleep disturbance, and pain interference. CONCLUSIONS We found that patients with high levels of depression, anxiety, and sleep disturbance using the PROMIS CAT were predictive of unsuccessful trials. In addition, we found that patients with successful SCS trials reported lower levels of these domains on PROMIS CAT administered at the end of the trial.
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Affiliation(s)
- Johnathan H Goree
- Department of Anesthesiology, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
| | - Nalin Payakachat
- Division of Pharmaceutical Evaluation and Policy, College of Pharmacy, UAMS, Little Rock, Arkansas, USA
| | - Lauren Byers
- Interventional Pain Clinic, UAMS Orthopedic and Spine Hospital, Little Rock, Arkansas, USA
| | - G Lawson Smith
- Department of Anesthesiology, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
| | - Jarna R Shah
- Department of Anesthesiology, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
| | - Kimberly E Stephens
- Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
- Arkansas Children's Research Institute, Little Rock, Arkansas, USA
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Mehta K, Gosselin NH, Insogna K, Barriere O, Quattrocchi E, Hruska MW, Marsteller D. Item Response Theory Quantifies the Relationship Between Improvements in Serum Phosphate and Patient-Reported Outcomes in Adults With X-Linked Hypophosphatemia. Clin Pharmacol Ther 2024; 116:1343-1351. [PMID: 39129452 DOI: 10.1002/cpt.3406] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/14/2024] [Accepted: 07/17/2024] [Indexed: 08/13/2024]
Abstract
Burosumab is indicated for treatment of a rare bone disease, X-linked hypophosphatemia (XLH). The aim of this analysis was to evaluate the relationship between a treatment response biomarker and patient-reported outcomes (PROs). Longitudinal data for PROs were obtained from adults with XLH from a phase III study. Individual rich time profiles of the biomarker, serum phosphate were simulated using a prior population pharmacokinetic-pharmacodynamic model to calculate serum phosphate exposure metrics for each 28-day treatment cycle, which were then merged with PROs data. Item response theory parameters were first estimated to map a latent variable, ψ, that is, disability score, relative to baseline. Next, the relationships between serum phosphate exposures and ψ were modeled using a nonlinear mixed-effect (NLME) modeling approach. A combined item response theory-NLME model with average serum phosphate as a predictor of ψ described PROs data well. The model estimates suggested 28%, 31%, and 25% reduction in Western Ontario and McMaster Universities Osteoarthritis Index, brief pain inventory, and brief fatigue inventory scores, respectively, with every unit increase in average serum phosphate from the lower limit of normal (2.5 mg/dL). Additionally, a time effect of ~ 0.08% improvements each week was estimated. The analysis suggested that burosumab treatment-induced improvements in serum phosphate levels are associated with improvements in PROs in adults with X-linked hypophosphatemia. The analyses confirmed the importance of prolonged serum phosphate level correction in adult patients with XLH. These results can be useful to guide the design of further studies and to design treatment optimization strategies.
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Affiliation(s)
- Krina Mehta
- Kyowa Kirin Inc., Princeton, New Jersey, USA
| | | | - Karl Insogna
- Yale University School of Medicine, New Haven, Connecticut, USA
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Piscitelli D, Brichetto G, Geri T, Battista S, Testa M, Monti Bragadin M, Pellicciari L. Italian adaptation and psychometric validation of the Fatigue Impact Scale (FIS) and its modified versions in adults with multiple sclerosis: a Rasch analysis study. Disabil Rehabil 2024; 46:5366-5379. [PMID: 38236054 DOI: 10.1080/09638288.2024.2302878] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/25/2023] [Revised: 12/14/2023] [Accepted: 12/21/2023] [Indexed: 01/19/2024]
Abstract
PURPOSE Several outcome measures are available to assess the severity of fatigue in people with multiple sclerosis (MS). The aim of this study was to adapt the Italian version of the Fatigue Impact Scale (FIS-40) and its modified versions: a 21-item Modified scale (MFIS-21), its 5-item short version (MFIS-5), and an 8-item version for daily use (DFIS-8) and investigate their measurement properties through classical theory-test (CTT) and Rasch analysis (RA). METHODS 229 Italian-speaking adults with MS were included. Questionnaires were cross-culturally translated and subjected to CTT (i.e. internal consistency through Cronbach's alpha and unidimensionality through confirmatory factor analysis [CFA]) and RA. (i.e. internal construct validity, reliability, and targeting). RESULTS Internal consistency was high for all scales (>0.850). Final CFAs reported issues in the unidimensionality for all scales except for FIS-40. Baseline RA revealed a misfit for all scales. After adjusting for local dependency, FIS-40, MFIS-21, and MFIS-5 fitted the Rasch model (RM). MFIS-21 and D-FIS-8 required a structural modification, i.e. item deletions to satisfy the RM. CONCLUSION The FIS-40, MFIS-21, MFIS-5, and DFIS-8 achieved the fit to the RM after statistical and structural modifications. The fit to the RM allowed for providing ordinal-to-interval measurement conversion tables for all the questionnaires.
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Affiliation(s)
- Daniele Piscitelli
- Doctor of Physical Therapy Program, Department of Kinesiology, University of Connecticut, Storrs, CT, USA
- School of Medicine and Surgery, University of Milano-Bicocca, Milan, Italy
| | - Giampaolo Brichetto
- Scientific Research Area, Italian MS Foundation (FISM), Genoa, Italy
- AISM Rehabilitation Center, Italian MS Society (AISM), Genoa, Italy
| | | | - Simone Battista
- Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, University of Genoa, Campus of Savona, Italy
| | - Marco Testa
- Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, University of Genoa, Campus of Savona, Italy
| | - Margherita Monti Bragadin
- Scientific Research Area, Italian MS Foundation (FISM), Genoa, Italy
- AISM Rehabilitation Center, Italian MS Society (AISM), Genoa, Italy
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Trevino CO, Lai JS, Tang X, LeWinn KZ, Nozadi SS, Wosu A, Leve LD, Towe-Goodman NR, Ni Y, Graff JC, Karr CJ, Collett BR. Using ECHO program data to develop a brief measure of caregiver support and cognitive stimulation using the home observation for measurement of the environment-infant/toddler (HOME-IT). Child Dev 2024; 95:2241-2251. [PMID: 39080971 PMCID: PMC11581929 DOI: 10.1111/cdev.14137] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/23/2024]
Abstract
Data from three NIH Environmental influences on Child Health Outcomes (ECHO) Program cohorts that collected the HOME-Infant-Toddler (HOME-IT age 0-3 years) version were used to examine the reliability of a brief scale of caregiver support and cognitive stimulation. Participants with HOME-IT data (N = 2518) were included in this analysis. Mean child age at HOME-IT assessment was 1.51 years, 48% of children were female, and 43% of children identified as Black. A four-stage analysis plan was used to evaluate item response theory assumptions, item response theory model fit, monotonicity, scalability, item fit, and differential item functioning. Results indicate the feasibility of developing a reliable 10-item scale (reliability >0.7) with particularly high precision for children with lower levels of cognitive stimulation.
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Affiliation(s)
- Cindy O Trevino
- Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, USA
| | - Jin-Shei Lai
- Department of Medical and Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA
| | - Xiaodan Tang
- Department of Medical and Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA
| | - Kaja Z LeWinn
- Department of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, California, USA
| | - Sara S Nozadi
- Department of Pharmaceutical Sciences, University of New Mexico, Albuquerque, New Mexico, USA
| | - Adaeze Wosu
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA
| | - Leslie D Leve
- College of Education, University of Oregon, Eugene, Oregon, USA
| | - Nissa R Towe-Goodman
- Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
| | - Yu Ni
- School of Public Health, College of Health and Human Services, San Diego State University, San Diego, California, USA
| | - Joyce Carolyn Graff
- College of Nursing and Center on Developmental Disabilities, The University of Tennessee Health Science Center, Memphis, Tennessee, USA
| | - Catherine J Karr
- Department of Environmental & Occupational Health Sciences, University of Washington, Seattle, Washington, USA
| | - Brent R Collett
- Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, USA
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Seamon BA, Kautz SA, Velozo CA. Computerized Adaptive Testing for the Berg Balance Scale Improves Measurement Efficiency Without Compromising Precision in People With Stroke. Phys Ther 2024; 104:pzae112. [PMID: 39113593 PMCID: PMC11584411 DOI: 10.1093/ptj/pzae112] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/04/2022] [Revised: 04/15/2024] [Accepted: 07/14/2024] [Indexed: 08/10/2024]
Abstract
OBJECTIVE The objectives of this study were to confirm the Berg Balance Scale's (BBS) measurement properties and unidimensionality with an item response theory analysis in persons with subacute and chronic stroke and to examine the precision and efficiency of computerized adaptive testing (CAT). METHODS Data were obtained from 519 ambulatory persons with subacute and chronic stroke in 2 retrospective databases. A principal component analysis (PCA) of residuals was used to evaluate unidimensionality. BBS fit to a rating scale model versus a partial credit model was examined, and item parameters were generated for CAT calibration. Person measures from all 14 items were defined as actual balance ability. BBS CAT simulations were used to examine changes in measurement precision with increasing number of items administered and a precision-based stopping rule (0.5 logit standard error [SE] threshold). RESULTS A PCA of residuals supports the BBS unidimensionality and Rasch analysis supports using the rating scale model for measurement. Maximum precision for BBS CAT was SE = 0.40 logits when administering all items. BBS CAT estimated balance ability was highly correlated with actual ability when 4 or more items were administered (r > 0.9). Precision was within 0.5 logits when 5 or more items were administered (SE < 0.48 logits). BBS CAT estimated balance ability was highly correlated with actual ability (r = 0.952) using a precision-based stopping rule. The average number of items administered with the precision-based stopping rule was 5.43. CONCLUSION The BBS is sufficiently unidimensional, and the rating scale model can be used for measurement. BBS CAT is efficient and replicates the full instrument's reliability when measuring balance ability in ambulatory persons with subacute and chronic stroke. Future work should aim to enhance the interpretability of measures to facilitate clinical decision-making. IMPACT BBS CAT provides an efficient way of measuring balance ability for individuals in stroke rehabilitation giving clinicians more time with patients.
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Affiliation(s)
- Bryant A Seamon
- Ralph H. Johnson VA Medical Center, Charleston, South Carolina, USA
- Division of Physical Therapy, Department of Rehabilitation Sciences, College of Health Professions, Medical University of South Carolina, Charleston, South Carolina, USA
| | - Steven A Kautz
- Ralph H. Johnson VA Medical Center, Charleston, South Carolina, USA
- Division of Physical Therapy, Department of Rehabilitation Sciences, College of Health Professions, Medical University of South Carolina, Charleston, South Carolina, USA
- Department of Health Sciences and Research, College of Health Professions, Medical University of South Carolina, Charleston, South Carolina, USA
| | - Craig A Velozo
- Division of Occupational Therapy, Department of Rehabilitation Sciences, College of Health Professions, Medical University of South Carolina, Charleston, South Carolina, USA
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Kaplan-Kahn EA, Benecke RM, Guthrie W, Yerys BE, Holmes LG, Miller JS. Measurement invariance of the PROMIS emotional distress and subjective well-being domains among autistic and General Population adolescents. Qual Life Res 2024; 33:3003-3012. [PMID: 39080090 PMCID: PMC11541282 DOI: 10.1007/s11136-024-03742-9] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 07/15/2024] [Indexed: 11/07/2024]
Abstract
PURPOSE Quality of life (QoL) is identified as a clinical and research priority by the autistic community. Researchers have the responsibility to ensure that instruments used to measure QoL do so reliably and accurately among autistic participants. METHODS Our study evaluated measurement invariance of Emotional Distress (Depression, Anxiety, Anger, Psychological Stress) and Subjective Well-Being (Life Satisfaction, Positive Affect, and Meaning & Purpose) scales of the Patient-Reported Outcomes Measurement Information System (PROMIS) among groups of autistic (N=140, n per scale=132-140) and general population (N=1,224, n per scale=406-411) teenagers (14-17 years). These scales were included in the PROMIS Autism Battery-Lifespan, which uses PROMIS scales to measure QoL domains most relevant for autistic people. RESULTS Multi-group confirmatory factor analyses using permutation tests demonstrated that Depression and Positive Affect scales exhibited scalar invariance between groups, indicating that scores can be meaningfully compared across autistic and general population teens. Anger and Psychological Stress scales demonstrated metric invariance between groups, indicating that these scales measure the same latent trait in both groups, but group comparisons are not supported. CONCLUSION We provide guidance as to how these scales can be used in psychometrically supported ways to capture constructs relevant for understanding QoL among autistic teens.
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Affiliation(s)
| | - Rachel M Benecke
- Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, PA, USA
- College of Education and Human Development, Temple University, Philadelphia, PA, USA
| | - Whitney Guthrie
- Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, PA, USA
- Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Benjamin E Yerys
- Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, PA, USA
- Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Laura Graham Holmes
- Silberman School of Social Work at Hunter College, City University of New York, New York, NY, USA
| | - Judith S Miller
- Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, PA, USA
- Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
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Pan J, Gao X. Using Item Response Theory to Develop a Shortened Version of the Penn State Worry Questionnaire for Children. Child Psychiatry Hum Dev 2024:10.1007/s10578-024-01774-3. [PMID: 39432200 DOI: 10.1007/s10578-024-01774-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 10/07/2024] [Indexed: 10/22/2024]
Abstract
The PSWQ-C is a widely used international scale to measure worry traits in children and adolescents. It has been translated into several versions for use in different countries. The purpose of this study was to examine the psychometric characteristics of the Penn State Worry Questionnaire for Children (PSWQ-C) particularly three reverse-scored items, and to develop a shorter version of the PSWQ-C based on Item Response Theory (IRT) methods. 903 children and adolescents of different ages from China participated in the study. This study used the Graded Response Model (GRM) to fit the data and examined the IRT parameters of each item, Item Characteristic Curve, Item Information Functions, and Differential Item Functioning. Eight items with undesirable functioning were removed, while six items with good functioning were retained, resulting in a simplified version of the PSWQ-C. The abbreviated version of the PSWQ-C was subsequently validated for its reliability and validity. The results confirmed that the abbreviated scale is reliable and effective, with a Cronbach's alpha coefficient of 0.84, indicating good reliability. Regarding validity, the abbreviated version of the PSWQ-C demonstrated significant correlations with IUS-12 and MASC, both exceeding 0.60, which closely resembles the correlation of the original PSWQ-C with these two scales. Furthermore, the correlation between the two versions was 0.96, indicating that the abbreviated PSWQ-C can effectively replace the original version and has a broader range of applications.
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Affiliation(s)
- Jiarui Pan
- School of Psychology, Guizhou Normal University, Guiyang, Guizhou, 550025, China
| | - Xuliang Gao
- School of Psychology, Guizhou Normal University, Guiyang, Guizhou, 550025, China.
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Yu Y, Dai B, Lin L, Zhang C. Adaptation of a Chinese Version of the Relational Needs Satisfaction Scale Based on Item Response Theory Among Chinese Adults Aged 18-30. Psychol Res Behav Manag 2024; 17:3595-3610. [PMID: 39435369 PMCID: PMC11492924 DOI: 10.2147/prbm.s471200] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/12/2024] [Accepted: 10/02/2024] [Indexed: 10/23/2024] Open
Abstract
Purpose The satisfaction of relational needs is an important indicator of the quality of interpersonal relationships, but few studies on this topic have been conducted in China. The Relational Needs Satisfaction Scale (RNSS) was developed and used in three countries. Patients and Methods In this study, the scale was standardized. A total of 2136 Chinese adults aged 18-30 years were recruited to complete the RNSS-Chinese (RNSS-C) and the Satisfaction with Life Scale (SWLS) online, and classical test theory and item response theory (IRT) were used to analyze the psychometric characteristics of the RNSS-C. The measurement invariance of the Chinese and Czech RNSSs was analyzed. Results (1) The RNSS still has good reliability (Cronbach's alpha = 0.935) and validity (CFI=0.948, TLI=0.940, RMSEA=0.049, and SRMR=0.032) in China. (2) The RNSS-C revealed differences in the perceptions of relational needs construct between the two groups (ΔCFI=0.014>0.01). Conclusion These findings contribute to a deeper understanding of the cultural factors that shape interpersonal relationships and satisfaction in China.
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Affiliation(s)
- Yahui Yu
- School of Psychology, Jiangxi Normal University, Nanchang, Jiangxi, People’s Republic of China
- School of Psychology, South China Normal University, Guangzhou, Guangdong, People’s Republic of China
| | - Buyun Dai
- School of Psychology, Jiangxi Normal University, Nanchang, Jiangxi, People’s Republic of China
| | - Lingkai Lin
- School of Psychology, Jiangxi Normal University, Nanchang, Jiangxi, People’s Republic of China
| | - Chao Zhang
- School of Psychology, Jiangxi Normal University, Nanchang, Jiangxi, People’s Republic of China
- School of Psychology, South China Normal University, Guangzhou, Guangdong, People’s Republic of China
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Dashner J, Espín-Tello SM, Chen SW, Hollingsworth H, Bollinger R, Morgan KA, Stark S. Influence of falls, fall-related injuries, and fear of falling on social participation in people aging with long-term physical disability: a cross-sectional study. Disabil Rehabil 2024; 46:4979-4987. [PMID: 38108275 PMCID: PMC11749352 DOI: 10.1080/09638288.2023.2293990] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/12/2023] [Revised: 10/18/2023] [Accepted: 11/28/2023] [Indexed: 12/19/2023]
Abstract
PURPOSE This study examined prevalence and relationships among falls, injuries, fear of falling, and social participation in people aging with long-term physical disability (PAwLTPD). MATERIALS AND METHODS A convenience sample of 474 PAwLTPD recruited from community agencies and social media as baseline of a longitudinal cohort study. Inclusion criteria: 45-65 years, self-reported physical disability for ≥5 years, and English-speaking. Self-report surveys of physical/mental health, falls in the past year, fear of falling, and Patient-Reported Outcomes Measurement Information System (PROMIS) ability and satisfaction with participation in social roles and activities measures were collected. RESULTS Mean age 56.8 years; participants were mostly female (66.7%) and White (61.4%). Nearly 65% reported a fall; 56.6% of falls resulted in injury. Falls and fall-related injuries were associated with worse physical/mental health and presence of >5 health conditions. Seventy-five percent of participants reported fear of falling. Lower ability and satisfaction with participation were found in participants who fell and worried about falls. CONCLUSIONS PAwLTPD are at increased risk of falls, fall-related injuries, and fear of falling, which affects their ability to engage in social activities. Future research is needed to understand circumstances associated with falls and to develop effective interventions to address falls in PAwLTPD.
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Affiliation(s)
- Jessica Dashner
- Program in Occupational Therapy, Washington University School of Medicine in St. Louis, St. Louis, USA
| | - Sandra M. Espín-Tello
- Instituto de Investigación Sanitaria Aragón, Universidad de Zaragoza, Zaragoza, Spain
| | - Szu-Wei Chen
- Program in Occupational Therapy, Washington University School of Medicine in St. Louis, St. Louis, USA
| | - Holly Hollingsworth
- Program in Occupational Therapy, Washington University School of Medicine in St. Louis, St. Louis, USA
| | - Rebecca Bollinger
- Program in Occupational Therapy, Washington University School of Medicine in St. Louis, St. Louis, USA
| | - Kerri A. Morgan
- Program in Occupational Therapy, Washington University School of Medicine in St. Louis, St. Louis, USA
| | - Susan Stark
- Program in Occupational Therapy, Washington University School of Medicine in St. Louis, St. Louis, USA
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Salsman JM, Nightingale CL, Canzona MR, Howard DS, Tucker-Seeley RD, Wiseman KD, Victorson DE, Robles JM, Roth M, Smith R, Reeve BB, Danhauer SC. Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development. J Adolesc Young Adult Oncol 2024; 13:760-767. [PMID: 38959182 PMCID: PMC11807903 DOI: 10.1089/jayao.2024.0041] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 07/05/2024] Open
Abstract
Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.
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Affiliation(s)
- John M. Salsman
- Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
- The Atrium Health Wake Forest Baptist Comprehensive Cancer Center, Winston Salem, North Carolina, USA
| | - Chandylen L. Nightingale
- Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
- The Atrium Health Wake Forest Baptist Comprehensive Cancer Center, Winston Salem, North Carolina, USA
| | - Mollie R. Canzona
- Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
- The Atrium Health Wake Forest Baptist Comprehensive Cancer Center, Winston Salem, North Carolina, USA
- Department of Communication, Wake Forest University, Winston Salem, North Carolina, USA
| | - Dianna S. Howard
- Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
| | | | - Kimberly D. Wiseman
- Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
- The Atrium Health Wake Forest Baptist Comprehensive Cancer Center, Winston Salem, North Carolina, USA
| | - David E. Victorson
- Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
| | - Joanna M. Robles
- The Atrium Health Wake Forest Baptist Comprehensive Cancer Center, Winston Salem, North Carolina, USA
- Department of Pediatrics, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
| | - Michael Roth
- Division of Pediatrics, University of Texas MD Anderson Cancer Center, Houston, Texas, USA
| | - Regina Smith
- Clinical and Translational Science Institute, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
| | - Bryce B. Reeve
- Department of Population Health Sciences, Center for Health Measurement, Duke University School of Medicine, Durham, North Carolina, USA
| | - Suzanne C. Danhauer
- Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston Salem, North Carolina, USA
- The Atrium Health Wake Forest Baptist Comprehensive Cancer Center, Winston Salem, North Carolina, USA
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Loscalzo Y, Giannini M. Studyholism and Attachment Style: A Study among Italian University Students. Behav Sci (Basel) 2024; 14:865. [PMID: 39457737 PMCID: PMC11505361 DOI: 10.3390/bs14100865] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/23/2024] [Revised: 09/11/2024] [Accepted: 09/19/2024] [Indexed: 10/28/2024] Open
Abstract
Studyholism (or obsession with studying) is a new potential clinical condition introduced in the literature in 2017. Since then, growing research has supported its conceptualization as a clinical disorder and highlighted some potential intervention targets, namely trait worry, social anxiety, negative interpretation bias, and defense mechanisms. The present study aims to extend the literature concerning psychodynamic-related constructs that might constitute targets for interventions aimed at reducing Studyholism by investigating the role of attachment in 1073 students (Mage = 23.48 ± 3.77), balanced concerning civil status (i.e., currently being single or involved in a relationship/non-single). Among the main findings, we found that insecure attachment-mainly preoccupied attachment-is a positive predictor of Studyholism in both non-single and single students. However, there are also some differences depending on the civil status. Finally, (single) disengaged studyholics have a statistically significant lower level of secure attachment than (single) engaged studyholics. In conclusion, this study showed the value of distinguishing between non-single and single students when investigating the role of attachment. Regarding problematic overstudying specifically, the study provided support for its definition as a clinical disorder, also with evidence of the appropriateness of its OCD-related conceptualization. Finally, it suggests preoccupied (insecure) attachment as a target to reduce Studyholism by fostering in students the feeling of being loved and deserving of being loved in their current adult relationships.
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Affiliation(s)
- Yura Loscalzo
- Department of Health Sciences, School of Psychology, University of Florence, 50135 Florence, Italy;
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Ochoa Lopez AP, Garcia JM, Williams MW, Medina LD. Differential Item Functioning and Clinical Utility of the Subjective Memory Complaints Questionnaire in a Multi-Ethnic Cohort. Dement Geriatr Cogn Disord 2024; 54:85-95. [PMID: 39317176 PMCID: PMC11930848 DOI: 10.1159/000541236] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/16/2023] [Accepted: 08/30/2024] [Indexed: 09/26/2024] Open
Abstract
INTRODUCTION This study evaluated the psychometric properties of the Subjective Memory Complaints Questionnaire (SMCQ) in a non-Hispanic White (NHW) and Mexican American (MA) sample from Texas in the USA. METHODS Data were obtained from the Health and Aging Brain Study - Health Disparities (HABS-HD; N = 1,691, age = 66.5 ± 8.7, education = 12.4 ± 4.8, 60.6% female, 33.2% MA Spanish speaking). Unidimensionality of the SMCQ was evaluated with confirmatory factor analysis. Differential item functioning (DIF) of the SMCQ was assessed across age, sex, education, and ethnicity/language using item response theory/logistic ordinal regression. Associations of the SMCQ in relation to cognitive status, Alzheimer's disease (AD) blood-based biomarkers, and psychological distress were examined. RESULTS The SMCQ showed excellent fit in a single-factor model (CFI = 0.97, TLI = 0.97, RMSEA [95% CI] = 0.05 [0.04, 0.05], SRMR = 0.07). Significant item-level DIF was detected by education level and ethnicity/language, but not by age or sex; when detected, DIF was not salient (i.e., adverse). The SMCQ was associated with greater psychological distress, worse Clinical Dementia Rating scores, and greater disease burden as measured by total tau and neurofilament light. CONCLUSIONS Practically negligible item-level bias was identified across education and ethnicity/language. Detected DIF can be described as benign, indicating that some items manifested differently between groups but had minimal impact on measurement properties. These results demonstrate that the SMCQ performs appropriately across demographic variables. Our findings also provide support for the associations of SMCQ scores with self-reported mood, cognitive status, and AD blood-based biomarkers.
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Affiliation(s)
| | - Joshua M Garcia
- Department of Psychology, University of Houston, Houston, Texas, USA
| | | | - Luis D Medina
- Department of Psychology, University of Houston, Houston, Texas, USA
- Baylor College of Medicine, Houston, Texas, USA
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Wang J, Xie Y, Feng Z, Li J. Psychometric properties of computerized adaptive testing for chronic obstructive pulmonary disease patient-reported outcome measurement. Health Qual Life Outcomes 2024; 22:73. [PMID: 39227972 PMCID: PMC11373186 DOI: 10.1186/s12955-024-02291-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/03/2024] [Accepted: 08/27/2024] [Indexed: 09/05/2024] Open
Abstract
BACKGROUND Computerized adaptive testing (CAT) is an effective way to reduce time, repetitious redundancy, and respond burden, and has been used to measure outcomes in many diseases. This study aimed to develop and validate a comprehensive disease-specific CAT for chronic obstructive pulmonary disease (COPD) patient-reported outcome measurement. METHODS The discrimination and difficulty of the items from the modified patient-reported outcome scale for COPD (mCOPD-PRO) were analyzed using item response theory. Then the initial item, item selection method, ability estimation method, and stopping criteria were further set based on Concerto platform to form the CAT. Finally, the reliability and validity were validated. RESULTS The item discrimination ranged from 1.05 to 2.71, and the item difficulty ranged from - 3.08 to 3.65. The measurement reliability of the CAT ranged from 0.910 to 0.922 using random method, while that ranged from 0.910 to 0.924 using maximum Fisher information (MFI) method. The content validity was good. The correlation coefficient between theta of the CAT and COPD assessment test and modified Medical Research Council dyspnea scale scores using random method was 0.628 and 0.540 (P < 0.001; P < 0.001) respectively, while that using MFI method was 0.347 and 0.328 (P = 0.007; P = 0.010) respectively. About 11 items (reducing by 59.3%) on average were tested using random method, while about seven items (reducing by 74.1%) on average using MFI method. The correlation coefficient between theta of the CAT and mCOPD-PRO total scores using random method was 0.919 (P < 0.001), while that using MFI method was 0.760 (P < 0.001). CONCLUSIONS The comprehensive disease-specific CAT for COPD patient-reported outcome measurement is well developed with good psychometric properties, which can provide an efficient, accurate, and user-friendly measurement for patient-reported outcome of COPD.
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Affiliation(s)
- Jiajia Wang
- Collaborative Innovation Center for Chinese Medicine and Respiratory Diseases Co-constructed by Henan Province & Education Ministry of P.R. China, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China
- Henan Key Laboratory of Chinese Medicine for Respiratory Disease, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China
- Department of Respiratory Diseases, the First Affiliated Hospital of Henan University of Chinese Medicine, 19 Renmin Road, Zhengzhou, 450003, China
| | - Yang Xie
- Collaborative Innovation Center for Chinese Medicine and Respiratory Diseases Co-constructed by Henan Province & Education Ministry of P.R. China, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China
- Henan Key Laboratory of Chinese Medicine for Respiratory Disease, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China
- Department of Respiratory Diseases, the First Affiliated Hospital of Henan University of Chinese Medicine, 19 Renmin Road, Zhengzhou, 450003, China
| | - Zhenzhen Feng
- Collaborative Innovation Center for Chinese Medicine and Respiratory Diseases Co-constructed by Henan Province & Education Ministry of P.R. China, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China
- Henan Key Laboratory of Chinese Medicine for Respiratory Disease, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China
- Department of Respiratory Diseases, the First Affiliated Hospital of Henan University of Chinese Medicine, 19 Renmin Road, Zhengzhou, 450003, China
| | - Jiansheng Li
- Collaborative Innovation Center for Chinese Medicine and Respiratory Diseases Co-constructed by Henan Province & Education Ministry of P.R. China, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China.
- Henan Key Laboratory of Chinese Medicine for Respiratory Disease, Henan University of Chinese Medicine, 156 Jinshui East Road, Zhengzhou, 450046, China.
- Department of Respiratory Diseases, the First Affiliated Hospital of Henan University of Chinese Medicine, 19 Renmin Road, Zhengzhou, 450003, China.
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Dinh PC, Monahan PO, Fung C, Sesso HD, Feldman DR, Vaughn DJ, Hamilton RJ, Huddart R, Martin NE, Kollmannsberger C, Althouse S, Einhorn LH, Frisina R, Root JC, Ahles TA, Travis LB. Cognitive function in long-term testicular cancer survivors: impact of modifiable factors. JNCI Cancer Spectr 2024; 8:pkae068. [PMID: 39141447 PMCID: PMC11424079 DOI: 10.1093/jncics/pkae068] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/02/2024] [Revised: 07/17/2024] [Accepted: 08/07/2024] [Indexed: 08/16/2024] Open
Abstract
No study has comprehensively examined associated factors (adverse health outcomes, health behaviors, and demographics) affecting cognitive function in long-term testicular cancer survivors (TC survivors). TC survivors given cisplatin-based chemotherapy completed comprehensive, validated surveys, including those that assessed cognition. Medical record abstraction provided cancer and treatment history. Multivariable logistic regression examined relationships between potential associated factors and cognitive impairment. Among 678 TC survivors (median age = 46; interquartile range [IQR] = 38-54); median time since chemotherapy = 10.9 years, IQR = 7.9-15.9), 13.7% reported cognitive dysfunction. Hearing loss (odds ratio [OR] = 2.02; P = .040), neuropathic pain (OR = 2.06; P = .028), fatigue (OR = 6.11; P < .001), and anxiety/depression (OR = 1.96; P = .029) were associated with cognitive impairment in multivariable analyses. Being on disability (OR = 9.57; P = .002) or retired (OR = 3.64; P = .029) were also associated with cognitive decline. Factors associated with impaired cognition identify TC survivors requiring closer monitoring, counseling, and focused interventions. Hearing loss, neuropathic pain, fatigue, and anxiety/depression constitute potential targets for prevention or reduction of cognitive impairment in long-term TC survivors.
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Affiliation(s)
- Paul C Dinh
- Division of Medical Oncology, Indiana University School of Medicine, Indianapolis, IN, USA
| | - Patrick O Monahan
- Department of Biostatistics and Health Data Science, Indiana University, Indianapolis, IN, USA
| | - Chunkit Fung
- J.P. Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY, USA
| | - Howard D Sesso
- Division of Preventive Medicine, Brigham and Women’s Hospital, Boston, MA, USA
| | - Darren R Feldman
- Department of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY, USA
- Department of Medicine, Weill Cornell Medical College, New York, NY, USA
| | - David J Vaughn
- Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Robert J Hamilton
- Department of Surgical Oncology, Princess Margaret Cancer Centre, Toronto, ON, Canada
| | - Robert Huddart
- Division of Radiotherapy and Imaging, Institute of Cancer Research, London & Sutton, UK
- Urology Unit, Royal Marsden NHS Foundation Trust, London & Sutton, UK
| | - Neil E Martin
- Department of Radiation Oncology, Brigham and Women’s Hospital, Boston, MA, USA
| | | | - Sandra Althouse
- Department of Biostatistics and Health Data Science, Indiana University, Indianapolis, IN, USA
| | - Lawrence H Einhorn
- Division of Medical Oncology, Indiana University School of Medicine, Indianapolis, IN, USA
| | - Robert Frisina
- Department of Medical Engineering, University of South Florida, Tampa, FL, USA
| | - James C Root
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA
| | - Tim A Ahles
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA
| | - Lois B Travis
- Division of Medical Oncology, Indiana University School of Medicine, Indianapolis, IN, USA
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Hada A, Ohashi Y, Usui Y, Kitamura T. A scale of parent-to-child emotions: Adaptation, factor structure, and measurement invariance. FAMILY PROCESS 2024; 63:1677-1701. [PMID: 37547991 DOI: 10.1111/famp.12919] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/23/2022] [Revised: 07/11/2023] [Accepted: 07/17/2023] [Indexed: 08/08/2023]
Abstract
Emotions that parents feel when they think about their own child are extremely important in determining parenting approaches toward a child. Parental emotions should be defined under the rubric of human emotions that include both basic and self-conscious emotions. The Scale for Parent-to-Baby Emotions (SPBE) was developed underlying this concept, whereas an applicable scale for parent-to-child emotions for a wider age range for both mothers and fathers is needed. This study is aimed at examining the measurement invariance of this adapted scale among Japanese families. In a cross-sectional internet survey, men and women who had a child/children (including a fetus), whose eldest was aged up to 12 years old (N = 4600), were recruited. The questionnaire, which included the Scale for Parent-to-Child-Emotions-62 (SPCE-62) created from the SPBE via a process of rigorous translation, focused only on the eldest child. The feasibility of the SPCE-62 was assessed by a panel of three researchers. Each domain of both basic and self-conscious emotions was examined both in terms of robust factor structure and stable measurement invariance by multi-group confirmatory factor analysis. Responses to individual items were examined via item response theory, including differential item functioning. This resulted in a 43-item SPCE consisting of 9 domains: Happiness (four items), Anger (six items), Fear (four items), Sadness (five items), Disgust (five items), Shame (five items), Guilt (seven items), Alpha Pride (three items), and Beta Pride (four items). An empirical construct of parental emotion toward a child was derived. The SPCE makes it possible to measure parent-to-child emotions across parents' gender and the three age ranges of the child.
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Affiliation(s)
- Ayako Hada
- Kitamura Institute of Mental Health Tokyo, Shibuya-ku, Japan
- Kitamura KOKORO Clinic Mental Health, Shibuya-ku, Japan
- Department of Community Mental Health & Law, National Institute of Mental Health, National Center of Neurology and Psychiatry, Kodaira, Japan
| | - Yukiko Ohashi
- Kitamura Institute of Mental Health Tokyo, Shibuya-ku, Japan
- Department of Nursing, Faculty of Nursing, Josai International University, Togane, Japan
| | - Yuriko Usui
- Kitamura Institute of Mental Health Tokyo, Shibuya-ku, Japan
- Department of Midwifery and Women's Health, Division of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Japan
| | - Toshinori Kitamura
- Kitamura Institute of Mental Health Tokyo, Shibuya-ku, Japan
- Kitamura KOKORO Clinic Mental Health, Shibuya-ku, Japan
- T. and F. Kitamura Foundation for Studies and Skill Advancement in Mental Health, Shibuya-ku, Japan
- Department of Psychiatry, Graduate School of Medicine, Nagoya University, Nagoya, Japan
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Lim YM, Kim AR, Nam S, Park JH. Validity and reliability of the Yonsei lifestyle profile-active, balance, connection, diversity. J Eval Clin Pract 2024; 30:1049-1058. [PMID: 39031719 DOI: 10.1111/jep.14012] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/11/2024] [Revised: 05/02/2024] [Accepted: 05/05/2024] [Indexed: 07/22/2024]
Abstract
INTRODUCTION Lifestyle, defined as a way of living resulting from an individual's deliberate choices, is a crucial factor in improving and maintaining health. Consequently, the measurement and analysis of lifestyle are of significant importance. This study aims to validate the validity and reliability of the Yonsei Lifestyle Profile-Active, Balance, Connection, Diversity (YLP-ABCD) in measuring health-related lifestyles. METHODS Data were collected from 300 participants aged 55 and older using the YLP-ABCD. To analyse the validity and reliability of the YLP-ABCD, analysed using frequency, descriptive statistics, confirmatory factor analysis, and Rasch model analysis. RESULTS The results indicate that the YLP-ABCD, which consists of 35 items, demonstrates unidimensionality and local independence. The Rasch model confirmed the suitability of the 5-point Likert scale for the factors, excluding subfactors Balanced and Unbalanced. The item fit criteria (0.5 < MNSQ < 1.5) were met for all items. The distribution of the respondents' abilities suggests the need for additional items to measure their ability levels. Both the item and respondent separation indices and their reliabilities were satisfactory. CONCLUSION This study confirmed the utility of the YLP-ABCD as a valuable tool for measuring and understanding the multifaceted diversity of lifestyles. Therefore, by utilising YLP-ABCD to quantitatively measure health lifestyles, we anticipate contributing to improvements in human health and quality of life.
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Affiliation(s)
- Young-Myoung Lim
- Department of Occupational Therapy, Yonsei New-Normal Lifestyle Research Center, Yonsei University, Wonju, South Korea
| | - Ah-Ram Kim
- Department of Occupational Therapy, Yonsei New-Normal Lifestyle Research Center, Yonsei University, Wonju, South Korea
| | - Sanghun Nam
- Department of Occupational Therapy, Yonsei New-Normal Lifestyle Research Center, Yonsei University, Wonju, South Korea
| | - Ji-Hyuk Park
- Department of Occupational Therapy, College of Software and Digital Healthcare Convergence, Yonsei University, Wonju, South Korea
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Xu C, Sidey-Gibbons C, Lacourt TE. Development of a PROMIS multidimensional cancer-related fatigue (mCRF) form using modern psychometric techniques. Qual Life Res 2024; 33:2361-2373. [PMID: 38980641 PMCID: PMC11881535 DOI: 10.1007/s11136-024-03705-0] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/29/2024] [Indexed: 07/10/2024]
Abstract
PURPOSE To develop a PRO assessment of multidimensional cancer-related fatigue based on the PROMIS fatigue assessments. METHOD Cancer patients reporting fatigue were recruited from a comprehensive cancer care center and completed a survey including 39 items from the PROMIS Cancer Item Bank-Fatigue. Component and factor structures of the fatigue items were explored with Monte Carlo parallel factor and Mokken analyses, respectively. Psychometric properties were determined using item response theory, ensuring unidimensionality, scalability, and item independence. RESULTS Fatigue scores from a sample of 333 fatigued cancer patients (mean age = 59.50, SD = 11.62, 67% women) were used in all scale development analyses. Psychometric analyses yielded 3 dimensions: motivational fatigue (15 items), cognitive fatigue (9 items), and physical fatigue (9 items). The subscales showed strong unidimensionality, were scalable, and were free of differential item function. Confirmatory factor analyses in a new sample of 182 patients confirmed the findings. CONCLUSION The resulting 33-item PROMIS multidimensional cancer-related fatigue (mCRF) form provides a novel measure for the assessment of the different dimensions of cancer-related fatigue. It is the only multidimensional scale specific for cancer patients that has been developed using modern psychometric approaches. With its 3 dimensions (motivational, cognitive, and physical fatigue), this scale accurately captures the fatigue experienced by cancer patients, allowing clinicians to optimize fatigue management and improve patient care. The scale could also advance research on the nature and experience of cancer-related fatigue.
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Affiliation(s)
- Cai Xu
- Section of Patient Centered Analytics, Division of Internal Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
- MD Anderson Center for INSPiRED Cancer Care (Integrated Systems for Patient-Reported Data), The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | - Chris Sidey-Gibbons
- Section of Patient Centered Analytics, Division of Internal Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
- MD Anderson Center for INSPiRED Cancer Care (Integrated Systems for Patient-Reported Data), The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | - Tamara E Lacourt
- Department of Psychiatry, Unit1454, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX, 77030, USA.
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Liu JB, Pusic AL, Melucci AD, Brajcich BC, Fordham MJ, Lapsley JC, Ko CY, Temple LKF. Adding Patient-reported Outcomes to the American College of Surgeons National Surgical Quality Improvement Program: Results of the First 33,842 Patients From 65 Hospitals. Ann Surg 2024; 280:383-393. [PMID: 38860381 DOI: 10.1097/sla.0000000000006382] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/12/2024]
Abstract
OBJECTIVE To investigate the initial set of patient-reported outcomes (PROs) in the American College of Surgeons National Surgical Quality Improvement Program (NSQIP) and their associations with 30-day surgical outcomes. BACKGROUND PROs provide important information that can be used to improve routine care and facilitate quality improvement. The American College of Surgeons conducted a demonstration project to capture PROs into the NSQIP to complement clinical data. METHODS From February 2020 to March 2023, 65 hospitals collected Patient-Reported Outcomes Measurement Information System measures assessing global health, pain interference, fatigue, and physical function from patients accrued into the NSQIP. Using multivariable mixed regression, we compared the scores of patients with and without 30-day complications and further analyzed scores exceeding 1-SD worse than national benchmarks. RESULTS Overall, 33842 patients completed the Patient-Reported Outcomes Measurement Information System measures with a median of 58 days (IQR: 47-72) postoperatively. Among patients without complications (n = 31210), 33.9% had PRO scores 1-SD worse than national benchmarks. Patients with complications were 1.7 times more likely to report worse PROs (95% CI: 1.6-1.8). Patients with complications had lower scores for global physical health [adjusted mean difference (AMD): 2.6, 95% CI: 2.2-3.0], lower for global mental health (AMD: 1.8, 95% CI: 1.4-2.2), higher for pain interference (AMD: 2.4, 95% CI: 2.0-2.8), higher fatigue (AMD: 2.7, 95% CI: 2.3-3.1), and lower physical function (AMD: 3.2, 95% CI: 2.8-3.5). CONCLUSIONS Postoperative complications negatively affect multiple key dimensions of patients' health-related quality of life. PROs were well below national benchmarks for many patients, even among those without complications. Identifying solutions to improve PROs after surgery remains a tremendous quality improvement opportunity.
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Affiliation(s)
- Jason B Liu
- Patient-Reported Outcomes, Value, and Experience Center, Brigham and Women's Hospital, Boston, MA
- Harvard Medical School, Boston, MA
- Division of Surgical Oncology, Brigham and Women's Hospital, Boston, MA
| | - Andrea L Pusic
- Patient-Reported Outcomes, Value, and Experience Center, Brigham and Women's Hospital, Boston, MA
- Harvard Medical School, Boston, MA
- Division of Plastic and Reconstructive Surgery, Brigham and Women's Hospital, Boston, MA
| | - Alexa D Melucci
- Surgical Health Outcomes and Research for Equity (SHORE) Center, Department of Surgery, University of Rochester Medical Center, Rochester, NY
- Division of Colon and Rectal Surgery, Department of Surgery, University of Rochester Medical Center, Rochester, NY
| | - Brian C Brajcich
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
| | - Matthew J Fordham
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
| | - Jakob C Lapsley
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
| | - Clifford Y Ko
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
- The David Geffen School of Medicine at UCLA, Los Angeles, CA
| | - Larissa K F Temple
- Surgical Health Outcomes and Research for Equity (SHORE) Center, Department of Surgery, University of Rochester Medical Center, Rochester, NY
- Division of Colon and Rectal Surgery, Department of Surgery, University of Rochester Medical Center, Rochester, NY
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