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Ataman R, Alhasani R, Auneau-Enjalbert L, Quigley A, Michael HU, Ahmed S. Measurement properties of the Traumatic Brain Injury Quality of Life (TBI-QoL) and Spinal Cord Injury Quality of Life (SCI-QoL) measurement systems: a systematic review. Syst Rev 2025; 14:18. [PMID: 39838501 PMCID: PMC11749626 DOI: 10.1186/s13643-024-02722-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/13/2024] [Accepted: 11/25/2024] [Indexed: 01/23/2025] Open
Abstract
PURPOSE Traumatic brain injury and spinal cord injury impact all areas of individuals' quality of life. A synthesis of available evidence for the Traumatic Brain Injury Quality of Life (TBI-QoL) and Spinal Cord Injury Quality of Life (SCI-QoL) measurement systems could inform evidence-based clinical practice and research. Thus, we aimed to systematically review the literature of existing evidence on the measurement properties of SCI-QoL and TBI-QoL among rehabilitation populations. METHODS We used the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) framework for evaluating measures to guide this systematic review. We searched nine electronic databases and registries, and hand-searched reference lists of included articles. Two independent reviewers screened selected articles and extracted the data. We used COSMIN's thresholds to synthesize measurement properties evidence (insufficient, sufficient), and the modified GRADE approach to synthesize evidence quality (very-low, low, moderate, high). RESULTS We included 16 studies for SCI-QoL and 14 studies for TBI-QoL. Both measurement systems have sufficient content validity, structural validity, internal consistency and construct validity across nearly all domains (GRADE: high). Most SCI-QoL domains and some TBI-QoL domains have sufficient evidence of cross-cultural validity and test-retest reliability (GRADE: moderate-high). Besides the cognition domains of TBI-QoL, which have indeterminate evidence for measurement error and sufficient evidence for responsiveness (GRADE: high), there is no additional evidence available for these measurement properties. CONCLUSION Rehabilitation researchers and clinicians can use SCI-QoL and TBI-QoL to describe and evaluate patients. Further evidence of measurement error, responsiveness, and predictive validity would advance the use and interpretation of SCI-QoL and TBI-QoL in rehabilitation.
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Affiliation(s)
- Rebecca Ataman
- School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada
- Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, Montréal, Québec, Canada
- Quality Division, Clinical Institutes and Quality Programs, Ontario Health, Toronto, Canada
| | - Rehab Alhasani
- Department of Rehabilitation, Princess Nora Bint Abdul Rahman University, Riyadh, Saudi Arabia
| | - Line Auneau-Enjalbert
- School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada
- Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, Montréal, Québec, Canada
| | - Adria Quigley
- School of Physiotherapy, Dalhousie University, Forrest Building, 5869 University Avenue, PO Box 15000, Halifax, NS, B3H 4R2, Canada
- Nova Scotia Health Authority, Nova Scotia Rehabilitation and Arthritis Centre, 1341 Summer St, Halifax, NS, B3H 4K4, Canada
| | - Henry Ukachukwu Michael
- Division of Experimental Medicine, McGill University, Montreal, QC, Canada
- Center for Outcomes Research and Evaluation (CORE), Research Institute of the McGill University Health Center, Montreal, QC, Canada
| | - Sara Ahmed
- School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada.
- Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, Montréal, Québec, Canada.
- Center for Outcomes Research and Evaluation (CORE), Research Institute of the McGill University Health Center, Montreal, QC, Canada.
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Nemeth C, Banik NL, Haque A. Disruption of Neuromuscular Junction Following Spinal Cord Injury and Motor Neuron Diseases. Int J Mol Sci 2024; 25:3520. [PMID: 38542497 PMCID: PMC10970763 DOI: 10.3390/ijms25063520] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/20/2024] [Revised: 03/16/2024] [Accepted: 03/18/2024] [Indexed: 02/01/2025] Open
Abstract
The neuromuscular junction (NMJ) is a crucial structure that connects the cholinergic motor neurons to the muscle fibers and allows for muscle contraction and movement. Despite the interruption of the supraspinal pathways that occurs in spinal cord injury (SCI), the NMJ, innervated by motor neurons below the injury site, has been found to remain intact. This highlights the importance of studying the NMJ in rodent models of various nervous system disorders, such as amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth disease (CMT), spinal muscular atrophy (SMA), and spinal and bulbar muscular atrophy (SBMA). The NMJ is also involved in myasthenic disorders, such as myasthenia gravis (MG), and is vulnerable to neurotoxin damage. Thus, it is important to analyze the integrity of the NMJ in rodent models during the early stages of the disease, as this may allow for a better understanding of the condition and potential treatment options. The spinal cord also plays a crucial role in the functioning of the NMJ, as the junction relays information from the spinal cord to the muscle fibers, and the integrity of the NMJ could be disrupted by SCI. Therefore, it is vital to study SCI and muscle function when studying NMJ disorders. This review discusses the formation and function of the NMJ after SCI and potential interventions that may reverse or improve NMJ dysfunction, such as exercise, nutrition, and trophic factors.
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Affiliation(s)
- Colin Nemeth
- Department of Microbiology and Immunology, Medical University of South Carolina, 173 Ashley Avenue, Charleston, SC 29425, USA; (C.N.); (N.L.B.)
- Department of Neurosurgery, Medical University of South Carolina, 96 Jonathan Lucas Street, Charleston, SC 29425, USA
| | - Naren L. Banik
- Department of Microbiology and Immunology, Medical University of South Carolina, 173 Ashley Avenue, Charleston, SC 29425, USA; (C.N.); (N.L.B.)
- Department of Neurosurgery, Medical University of South Carolina, 96 Jonathan Lucas Street, Charleston, SC 29425, USA
- Ralph H. Johnson Veterans Administration Medical Center, 109 Bee Street, Charleston, SC 29401, USA
| | - Azizul Haque
- Department of Microbiology and Immunology, Medical University of South Carolina, 173 Ashley Avenue, Charleston, SC 29425, USA; (C.N.); (N.L.B.)
- Department of Neurosurgery, Medical University of South Carolina, 96 Jonathan Lucas Street, Charleston, SC 29425, USA
- Ralph H. Johnson Veterans Administration Medical Center, 109 Bee Street, Charleston, SC 29401, USA
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Colostomy may offer hope in improving quality of life: a phenomenological qualitative study with patients dependent on a wheelchair. Qual Life Res 2023:10.1007/s11136-023-03368-3. [PMID: 36869961 DOI: 10.1007/s11136-023-03368-3] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/05/2023] [Indexed: 03/05/2023]
Abstract
PURPOSE This study aimed to evaluate the perspectives of patients who had spinal cord injuries and were wheelchair-dependent on colostomy surgery, which is among the bowel movement methods. METHODS In this qualitative study, which was based on Heidegger's hermeneutical phenomenological approach, the Van Manen method was used to reveal how patients were affected by their experiences. The data of the study were collected by directly interviewing the patients and using a semi-structured interview guide. The interviews were recorded with a voice recorder device with the permission of the participants. Nine patients who were leading a life dependent on a wheelchair as a result of spinal cord injury made up the sample of the study. RESULTS Six of the participants were female. The ages of participants ranged between 32 and 52, and all of them were married. The results of the interviews indicated that the experiences of participants who were dependent on a wheelchair about bowel movement management consisted of three main themes: (a) difficult experiences; (b) coping with difficulties; and (c) colostomy awareness experience. CONCLUSIONS Results showed that knowledge of a stoma obtained from different sources was a glimmer of hope for patients but that healthcare professionals did not exhibit a supportive attitude toward this hope.
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Ture SD, Ozkaya G, Sivrioglu K. Relationship between neurogenic bowel dysfunction severity and functional status, depression, and quality of life in individuals with spinal cord injury. J Spinal Cord Med 2022; 46:424-432. [PMID: 35108161 PMCID: PMC10114961 DOI: 10.1080/10790268.2021.2021043] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/19/2022] Open
Abstract
OBJECTIVES/CONTEXT To evaluate the relationship between severity of neurogenic bowel dysfunction (NBD) and functional status, depression, and quality of life in individuals with spinal cord injury (SCI) and to determine the factors associated with developing moderate-to-severe NBD. DESIGN Cross-sectional study. SETTING University hospital rehabilitation outpatient clinic. PARTICIPANTS Individuals with traumatic SCI, at least one year post-injury (N = 92). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Neurogenic Bowel Dysfunction Score, Functional Independence Measure (FIM), Beck Depression Inventory (BDI), and Short Form-36 (SF-36). RESULTS In the current sample, we found that half of the individuals with SCI had moderate-to-severe NBD. Individuals with moderate and severe NBD had lower motor FIM (P = 0.008 and P = 0.006, respectively) and SF-36 physical functioning (PF) scale (P = 0.020 and P = 0.031, respectively) scores than individuals with very minor NBD. There was no difference in the BDI scores among individuals with different levels of NBD. Individuals with American Spinal Injury Association Impairment Scale (AIS) A injuries were more likely to develop moderate-to-severe NBD than those with AIS C (odds ratio (OR) = 6.52; 95% confidence interval (CI) 1.13-37.79; P = 0.005) or AIS D (OR = 17.19; 95% CI 3.61-81.82; p < 0.001) injuries. CONCLUSION Individuals with moderate-to-severe NBD had higher levels of dependency in activities of daily living and lower SF-36 PF scale scores than individuals with very minor NBD. Among individuals with SCI, completeness of injury was a significant factor for developing moderate-to-severe NBD.
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Affiliation(s)
- Sevda Demir Ture
- Department of Physical Medicine and Rehabilitation, Bursa Uludag University School of Medicine, Bursa, Turkey
| | - Guven Ozkaya
- Department of Biostatistics, Bursa Uludag University School of Medicine, Bursa, Turkey
| | - Koncuy Sivrioglu
- Department of Physical Medicine and Rehabilitation, Bursa Uludag University School of Medicine, Bursa, Turkey
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Li Q, Shen YL, Jiang YL, Li DS, Jin S. The effect of the therapy of "combination 3 methods progression" in patients with neurogenic bowel dysfunction (constipated type): Study protocol for a randomized controlled trial. Medicine (Baltimore) 2021; 100:e24662. [PMID: 33607803 PMCID: PMC7899824 DOI: 10.1097/md.0000000000024662] [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] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/15/2021] [Accepted: 01/19/2021] [Indexed: 01/05/2023] Open
Abstract
BACKGROUND As one of the important manifestations of neurogenic bowel dysfunction, constipation is characterized by high incidence and harmful effects. It has a negative impact on both physical and psychological health of patients. And there are no effective treatment options for this type of disease clinically. Therefore, this study is designed to examine the effect of the therapy of "combination 3 methods progression" in patients with neurogenic bowel dysfunction (constipated type). METHODS This is a randomized, controlled, parallel-design clinical trial. A total of 60 patients with neurogenic bowel dysfunction (constipated type) will be randomly assigned to intervention group and control group. The control group will receive 4 weeks of usual rehabilitation care, the intervention group will receive 4 weeks of the therapy of "combination 3 methods progression" in addition to usual rehabilitation care. The primary outcome is the number of spontaneous bowel movement per week. Secondary outcomes are stool characteristics, degree of difficulty in defecation, level of anxiety, level of depression, and level of self-efficacy. DISCUSSION The interventions of this protocol have been programmed to alleviate constipation in patients with neurogenic bowel dysfunction. Findings may provide preliminary evidence for clinical efficacy of the therapy of "combination 3 methods progression." TRIAL REGISTRATION Chinese Clinical Trial Registry, IDF: ChiCTR2000041463. Registered on December 26, 2020.
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Affiliation(s)
- Qing Li
- Nursing School, Chengdu University of Traditional Chinese Medicine
| | - Yin-Li Shen
- Department of Rehabilitation, Affiliated Hospital of Chengdu University of Traditional Chinese Medicine
| | - Yun-Lan Jiang
- College of Clinical Medicine, Chengdu University of Traditional Chinese Medicine, Chengdu, Sichuan Province, PR China
| | - Dong-Shuang Li
- Nursing School, Chengdu University of Traditional Chinese Medicine
| | - Song Jin
- Department of Rehabilitation, Affiliated Hospital of Chengdu University of Traditional Chinese Medicine
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Neurogenic Bowel in the Pediatric Patient—Management from Childhood to Adulthood. CURRENT BLADDER DYSFUNCTION REPORTS 2021. [DOI: 10.1007/s11884-020-00624-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
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Beaudoin M, Best KL, Routhier F, Atack L, Hitzig SL, Kairy D. Usability of the Participation and Quality of Life (PAR-QoL) Outcomes Toolkit Website for Spinal Cord Injury. Top Spinal Cord Inj Rehabil 2020; 26:64-77. [PMID: 32095067 DOI: 10.1310/sci2601-64] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/12/2023]
Abstract
Background: Quality of life (QoL) is an important parameter to monitor during rehabilitation; however, accurate assessment is challenging. Among individuals with spinal cord injury (SCI), assessing QoL is further challenged due to complex sequelae, such as secondary health conditions and factors related to community integration. A Participation and Quality of Life (PAR-QoL) toolkit was created to aid clinicians and researchers in the selection of QoL outcomes tools specific to SCI. Objectives: The aim of this study was to evaluate the use and usability of the PAR-QoL toolkit. Methods: A cross-sectional study was conducted using an online survey from December 2013 to November 2016. Google Analytics were collected from April 2012 to April 2018. Survey sections addressed "use" (behavioral practices and actual use) and "usability" (perceived ease of use and perceived usefulness). Any person who visited the PAR-QoL website was invited to complete the survey. Summary statistics and percent concordances were calculated to describe results from the survey and Google Analytics. Results: The PAR-QoL website had 188,577 users. The five most visited webpages were outcome tools, with bounce rates ranging from 77% to 90%. Of the 46 survey respondents, 67% were not current users of the PAR-QoL website, and 87% intended to use the resources in the future. Conclusion: Uptake of the PAR-QoL website is currently limited. Usability of the PAR-QoL website may be improved by modifying navigation, removing the "less useful" components, ensuring regular updates of content and resources, and promoting the website.
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Affiliation(s)
- Maude Beaudoin
- Université Laval, Quebec City, Canada.,Center for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec City, Canada
| | - Krista L Best
- Université Laval, Quebec City, Canada.,Center for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec City, Canada
| | - François Routhier
- Université Laval, Quebec City, Canada.,Center for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec City, Canada
| | - Lynda Atack
- Applied Research and Innovation Centre, Centennial College, Toronto, Canada
| | - Sander L Hitzig
- Neural Engineering & Therapeutics Team, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada.,St. John's Rehab Research Program, Sunnybrook Health Sciences Centre, Toronto, Canada.,University of Toronto, Toronto, Canada.,York University, Toronto, Canada
| | - Dahlia Kairy
- Université de Montréal, Montréal, Canada.,Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Centre intégré universitaire de santé et de services sociaux du Centre-Sud-de-l'Ile-de-Montréal, Montréal, Canada
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Bernardi M, Fedullo AL, Bernardi E, Munzi D, Peluso I, Myers J, Lista FR, Sciarra T. Diet in neurogenic bowel management: A viewpoint on spinal cord injury. World J Gastroenterol 2020; 26:2479-2497. [PMID: 32523306 PMCID: PMC7265150 DOI: 10.3748/wjg.v26.i20.2479] [Citation(s) in RCA: 37] [Impact Index Per Article: 7.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/31/2019] [Revised: 04/14/2020] [Accepted: 05/12/2020] [Indexed: 02/06/2023] Open
Abstract
The aim of this review is to offer dietary advice for individuals with spinal cord injury (SCI) and neurogenic bowel dysfunction. With this in mind, we consider health conditions that are dependent on the level of lesion including skeletal muscle atrophy, autonomic dysreflexia and neurogenic bladder. In addition, SCI is often associated with a sedentary lifestyle, which increases risk for osteoporosis and diseases associated with chronic low-grade inflammation, including cardiovascular and chronic kidney diseases. The Mediterranean diet, along with exercise and dietary supplements, has been suggested as an anti-inflammatory intervention in individuals with SCI. However, individuals with chronic SCI have a daily intake of whole fruit, vegetables and whole grains lower than the recommended dietary allowance for the general population. Some studies have reported an increase in neurogenic bowel dysfunction symptoms after high fiber intake; therefore, this finding could explain the low consumption of plant foods. Low consumption of fibre induces dysbiosis, which is associated with both endotoxemia and inflammation. Dysbiosis can be reduced by exercise and diet in individuals with SCI. Therefore, to summarize our viewpoint, we developed a Mediterranean diet-based diet and exercise pyramid to integrate nutritional recommendations and exercise guidelines. Nutritional guidelines come from previously suggested recommendations for military veterans with disabilities and individuals with SCI, chronic kidney diseases, chronic pain and irritable bowel syndrome. We also considered the recent exercise guidelines and position stands for adults with SCI to improve muscle strength, flexibility and cardiorespiratory fitness and to obtain cardiometabolic benefits. Finally, dietary advice for Paralympic athletes is suggested.
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Affiliation(s)
- Marco Bernardi
- Department of Physiology and Pharmacology "V. Erspamer", Sapienza University of Rome, Rome 00185, Italy
- Italian Paralympic Committee, Rome 00191, Italy
- Federazione Italiana Pallacanestro In Carrozzina (FIPIC), Rome 00188, Italy
| | - Anna Lucia Fedullo
- Federazione Italiana Pallacanestro In Carrozzina (FIPIC), Rome 00188, Italy
| | - Elisabetta Bernardi
- Department of Biosciences, Biotechnologies and Biopharmaceutics, University of Bari "Aldo Moro", Bari 70121, Italy
| | - Diego Munzi
- Joint Veteran Center, Scientific Department, Army Medical Center, Rome 00184, Italy
| | - Ilaria Peluso
- Research Centre for Food and Nutrition, Council for Agricultural Research and Economics (CREA-AN), Rome 00178, Italy
| | - Jonathan Myers
- VA Palo Alto Health Care System and Stanford University, Cardiology Division, Palo Alto, CA 94025, United States
| | | | - Tommaso Sciarra
- Joint Veteran Center, Scientific Department, Army Medical Center, Rome 00184, Italy
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Development of a novel neurogenic bowel patient reported outcome measure: the Spinal Cord Injury Patient Reported Outcome Measure of Bowel Function & Evacuation (SCI-PROBE). Spinal Cord 2020; 58:1060-1068. [PMID: 32393796 DOI: 10.1038/s41393-020-0467-x] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/06/2019] [Revised: 03/25/2020] [Accepted: 03/31/2020] [Indexed: 11/09/2022]
Abstract
STUDY DESIGN Outcome measure item generation and reduction. OBJECTIVES To develop a patient reported outcome measure (PROM) addressing the impact of neurogenic bowel dysfunction (NBD) on individuals living with traumatic or nontraumatic spinal cord injury (SCI). SETTING Tertiary rehabilitation center in Toronto, Canada. METHODS A PROM based on the International Classification of Functioning, Disability and Health (ICF) framework was developed using the following steps: (a) item generation, (b) item refinement through iterative review, (c) completion of items by individuals living with SCI and NBD followed by cognitive interviewing, and (d) further item refinement, item reduction, and construction of the preliminary PROM. RESULTS Following initial item generation and iterative review, the investigative team agreed on 55 initial items. Cognitive interviewing, additional revisions, and item reduction yielded an instrument comprised of 35 items; while ensuring at least two items were retained for each of the 16 previously identified challenges of living with NBD following the onset of a SCI. Scoring for the preliminary PROM ranges from 0 to 140. CONCLUSIONS A preliminary PROM informed by the ICF for assessing the impact of NBD post-SCI has been devised, which can be used to inform clinicians and decision-makers on optimal ways to treat this serious secondary health complication. Future work will assess the validity and clinimetric properties of the PROM.
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Tate DG, Wheeler T, Lane GI, Forchheimer M, Anderson KD, Biering-Sorensen F, Cameron AP, Santacruz BG, Jakeman LB, Kennelly MJ, Kirshblum S, Krassioukov A, Krogh K, Mulcahey MJ, Noonan VK, Rodriguez GM, Spungen AM, Tulsky D, Post MW. Recommendations for evaluation of neurogenic bladder and bowel dysfunction after spinal cord injury and/or disease. J Spinal Cord Med 2020; 43:141-164. [PMID: 32105586 PMCID: PMC7054930 DOI: 10.1080/10790268.2019.1706033] [Citation(s) in RCA: 57] [Impact Index Per Article: 11.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/08/2023] Open
Abstract
Objective: To provide an overview of clinical assessments and diagnostic tools, self-report measures (SRMs) and data sets used in neurogenic bladder and bowel (NBB) dysfunction and recommendations for their use with persons with spinal cord injury /disease (SCI/D).Methods: Experts in SCI/D conducted literature reviews, compiled a list of NBB related assessments and measures, reviewed their psychometric properties, discussed their use in SCI/D and issued recommendations for the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs) guidelines.Results: Clinical assessments included 15 objective tests and diagnostic tools for neurogenic bladder and 12 for neurogenic bowel. Following a two-phase evaluation, eight SRMs were selected for final review with the Qualiveen and Short-Form (SF) Qualiveen and the Neurogenic Bowel Dysfunction Score (NBDS) being recommended as supplemental, highly-recommended due to their strong psychometrics and extensive use in SCI/D. Two datasets and other SRM measures were recommended as supplemental.Conclusion: There is no one single measure that can be used to assess NBB dysfunction across all clinical research studies. Clinical and diagnostic tools are here recommended based on specific medical needs of the person with SCI/D. Following the CDE for SCI studies guidelines, we recommend both the SF-Qualiveen for bladder and the NBDS for bowel as relatively short measures with strong psychometrics. Other measures are also recommended. A combination of assessment tools (objective and subjective) to be used jointly across the spectrum of care seems critical to best capture changes related to NBB and develop better treatments.
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Affiliation(s)
- Denise G. Tate
- Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA
| | | | - Giulia I. Lane
- Department of Urology, University of Michigan, Ann Arbor, Michigan, USA
| | - Martin Forchheimer
- Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA
| | - Kim D. Anderson
- Department of Physical Medicine and Rehabilitation, Metro Health Medical Center, Case Western Reserve University, Cleveland, Ohio, USA
| | - Fin Biering-Sorensen
- Clinic for Spinal Cord Injuries, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
| | - Anne P. Cameron
- Department of Urology, University of Michigan, Ann Arbor, Michigan, USA
| | | | - Lyn B. Jakeman
- National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA
| | - Michael J. Kennelly
- Department of Urology, Carolinas Medical Center, Charlotte, North Carolina, USA
| | - Steve Kirshblum
- Rutgers New Jersey Medical School, Kessler Foundation, Kessler Institution for Rehabilitation, West Orange, New Jersey, USA
| | - Andrei Krassioukov
- International collaboration On Repair Discoveries (ICORD), Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
| | - Klaus Krogh
- Department of Clinical Medicine, Department of Hepatology and Gastroenterology, Aarhus University Hospital, Aarhus, Denmark
| | - M. J. Mulcahey
- Jefferson College of Rehabilitation Sciences, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
| | - Vanessa K. Noonan
- The Praxis Spinal Institute, The Rick Hansen Institute, Vancouver, British Columbia, Canada
| | - Gianna M. Rodriguez
- Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA
| | - Ann M. Spungen
- VA RR&D National Center of Excellence for the Medical Consequences of Spinal Cord Injury, James J Peters VA Medical Center, Bronx, New York, USA
| | - David Tulsky
- Department of Physical Therapy and Psychological & Brain Sciences, University of Delaware, Newark, Delaware, USA
| | - Marcel W. Post
- Department of Rehabilitation Medicine, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
- Center of Excellence for Rehabilitation Medicine, UMC Brain Center, University Medical Center Utrecht, University of Utrecht and De Hoogstraat, Utrecht, the Netherlands
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