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Spillane T, Murray K. Factors that influence school attendance and participation in children and adolescents with juvenile idiopathic arthritis - a systematic review of the literature. Pediatr Rheumatol Online J 2025; 23:47. [PMID: 40341053 PMCID: PMC12063317 DOI: 10.1186/s12969-025-01101-7] [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: 01/28/2025] [Accepted: 04/24/2025] [Indexed: 05/10/2025] Open
Abstract
INTRODUCTION Juvenile Idiopathic Arthritis (JIA) is an umbrella term for causes of inflammatory arthritis in children and adolescents. Symptoms include pain, stiffness and fatigue and this can have an impact on a child's ability to attend school or participate in school activities, such as physical education. METHODS Using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology, the research databases Pubmed, EMBASE and CINAHL were searched using key words related to JIA and school attendance and participation. Inclusion criteria were being 18 years old or under, having a diagnosis of JIA and examining JIA's impact on either school attendance or participation in a school activity. Included studies were examined for factors that affected attendance or participation. RESULTS Twelve research articles were included in the literature review. Six themes were identified as affecting attendance and participation. They were (1) Symptoms and treatment of JIA (2) Disability (3) Psychological symptoms (4) Disease activity and JIA subtype (5) Communication and school support and (6) Factors that increased participation. CONCLUSION Children and adolescents with JIA have reduced levels of school attendance and often cannot participate fully in school life due to their medical condition. Targeted strategies may improve participation rates in this population. Further research is needed in this area to develop interventions and strategies to facilitate the optimal educational and school experience possible for this cohort.
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Affiliation(s)
- Tom Spillane
- School of Medicine, University of Limerick, Limerick, Ireland.
| | - Kieran Murray
- School of Medicine, University of Limerick, Limerick, Ireland
- Health Service Executive MidWest, Limerick, Ireland
- Health Research Institute, University of Limerick, Limerick, Ireland
- Limerick Bone and Joint Group, Limerick, Ireland
- Atlantic Research Collaboration, Limerick, Ireland
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Feroe AG, Pulos N. Treatment of Juvenile Idiopathic Arthritis. Hand Clin 2025; 41:47-55. [PMID: 39521589 DOI: 10.1016/j.hcl.2024.07.005] [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] [Indexed: 11/16/2024]
Abstract
This review outlines the natural history, diagnosis, and management of juvenile idiopathic arthritis involving the hand and wrist. The discussion of management considers both nonoperative and surgical management to preserve functionality and mitigate long-term articular damage in children and adolescents. The review describes the current literature and identifies areas for further study.
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Affiliation(s)
- Aliya G Feroe
- Department of Orthopedic Surgery, Mayo Clinic, Rochester, MN, USA
| | - Nicholas Pulos
- Department of Orthopedic Surgery, Mayo Clinic, Rochester, MN, USA.
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Yenil S, Gur Kabul E, Basakci Calik B, Kilbas G, Yuksel S. Investigation of motor skill in patients with juvenile idiopathic arthritis: A cross sectional study. REVISTA COLOMBIANA DE REUMATOLOGÍA 2025; 32:36-42. [DOI: 10.1016/j.rcreu.2023.11.005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/12/2025]
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Sorokina L, Kaneva M, Artamonov A, Gordeeva N, Chikova I, Kostik M. Clinical and laboratory features of juvenile idiopathic arthritis with wrist involvement: Results of a retrospective cohort study. World J Clin Pediatr 2024; 13:91656. [PMID: 39350901 PMCID: PMC11438928 DOI: 10.5409/wjcp.v13.i3.91656] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/01/2024] [Revised: 06/16/2024] [Accepted: 06/26/2024] [Indexed: 08/30/2024] Open
Abstract
BACKGROUND Previous studies in the pre-biological era showed an association of wrist inflammation in juvenile idiopathic arthritis (JIA) with progressive disease course, polyarticular involvement and failure of methotrexate treatment. AIM To describe features of JIA, associated with wrist arthritis. METHODS Data from about 753 JIA patients were included in this retrospective cohort study. The clinical and laboratory features of patients with and without wrist involvement were analyzed. RESULTS Wrist involvement was found in oligoarthritis (5.8%), RF(-)/RF(+) polyarthritis (44.9%/15.0%), enthesitis-related arthritis (17.7%), and systemic (58.6%) JIA categories. Unilateral wrist involvement was typical for oligoarthritis patients, bilateral involvement was either equal to that of unilateral involvement or was more frequent in other categories. Wrist arthritis was found to be associated with female sex, a low incidence of uveitis, and more indications of systemic inflammation, including elevated levels of C-reactive protein, erythrocyte sedimentation rate, and platelets, as well as involvement of the cervical spine, temporomandibular, shoulder, elbow, metacarpophalangeal, proximal interphalangeal, distal interphalangeal, hip, ankle, and tarsus arthritis. The number of patients with hip osteoarthritis and hip replacement was also higher. Wrist arthritis was associated with a lower probability of achieving remission [hazard ratio (HR) = 1.3 (95%CI: 1.0-1.7), P = 0.055], and a higher probability of being treated with biologics [HR = 1.7 (95%CI: 1.3-2.10, P = 0.00009)]. CONCLUSION Wrist arthritis in JIA patients is a marker of a severe disease course, characterized by more intensive inflammation, unfavorable outcomes, and. requiring more intensive treatment with early administration of biologics. Close monitoring of wrist inflammation with ultrasound and MR assessment with early biological treatment might improve the outcomes.
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Affiliation(s)
- Lyubov Sorokina
- Hospital Pediatry, Saint Petersburg State Pediatric Medical University, Saint Petersburg 194100, Russia
| | - Maria Kaneva
- Hospital Pediatry, Saint Petersburg State Pediatric Medical University, Saint Petersburg 194100, Russia
| | - Artem Artamonov
- Hospital Pediatry, Saint Petersburg State Pediatric Medical University, Saint Petersburg 194100, Russia
| | - Natalia Gordeeva
- Department of Consulting and Diagnostic, Saint-Petersburg Children’s Hospital #2, n.a. Saint Mary Magdalene, Saint Petersburg 199004, Russia
| | - Irina Chikova
- Hospital Pediatry, Saint Petersburg State Pediatric Medical University, Saint Petersburg 194100, Russia
| | - Mikhail Kostik
- Hospital Pediatry, Saint Petersburg State Pediatric Medical University, Saint Petersburg 194100, Russia
- Research Laboratory of Autoimmune and Autoinflammatory Diseases, Almazov National Medical Research Center, Saint-Petersburg 197341, Russia
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Marchak CA, James S, Davidson I, Brown J, Houghton K. Handwriting speed in juvenile idiopathic arthritis using the detailed assessment of speed of handwriting. Pediatr Rheumatol Online J 2024; 22:75. [PMID: 39148108 PMCID: PMC11325831 DOI: 10.1186/s12969-024-01013-y] [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: 05/21/2024] [Accepted: 08/01/2024] [Indexed: 08/17/2024] Open
Abstract
BACKGROUND Handwriting is a commonly reported functional limitation for children with juvenile idiopathic arthritis (JIA). The aim of this study was to evaluate handwriting in children with JIA. FINDINGS Twelve children (mean age 13.0 years, SD = 1.9; range 9.1 to 15.6 years) with JIA completed the Detailed Assessment of Speed of Handwriting (DASH). The presence of hand and wrist arthritis, grip strength, disability, pain, and quality of life (QOL) was also assessed. The mean DASH score was 34.5th percentile (SD = 22.5). Eight (75%) scored below the 50th centile. DASH scores were negatively associated with grip strength (r = -0.31). CONCLUSIONS Handwriting difficulties are common in children with JIA. Handwriting assessment may be helpful to direct treatments, and advocate for support and accommodations in school.
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Affiliation(s)
- C A Marchak
- Pediatric Resident Doctor, University of British Columbia, Vancouver, Canada
| | - S James
- Occupational Therapist, BC Children's Hospital, Vancouver, Canada
| | - I Davidson
- Physiotherapist, BC Children's Hospital, Vancouver, Canada
| | - J Brown
- Occupational Therapist, BC Children's Hospital, Vancouver, Canada
| | - K Houghton
- Pediatric Rheumatologist BC Children's Hospital, Vancouver, Canada.
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Atiković A, Čolakhodžić E, Užičanin E, Petković E, Nožinović Mujanović A, Mujanović E, Zahirović J, Mešković N, Lilić A. Age and Gender Differences in Anthropometric Characteristics and Motor Performance of 3 through 6 Young Kids Aged (Pilot Study). CHILDREN (BASEL, SWITZERLAND) 2023; 10:children10030590. [PMID: 36980148 PMCID: PMC10047391 DOI: 10.3390/children10030590] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/02/2023] [Revised: 03/09/2023] [Accepted: 03/15/2023] [Indexed: 03/30/2023]
Abstract
BACKGROUND It is crucial to evaluate children's motor coordination and strength to identify possible motor deficits on the right or left side of the body. However, whether a distinction exists in children aged 3-6 must be clarified. The goal of the current research was to investigate the differences in motor skills between preschool boys and girls, dominant and non-dominant hands or legs, in children of preschool age. (2) Methods: The present study was conducted on a sample of children (boys, n = 52; girls, n = 52; age range, 3-6 years). Three motor tests evaluated on both sides of the body served as the sample of factors used to measure athletic performance. Leg tapping (15 s), hand tapping (15 s), and a maximal hand grip strength (HGS) test kg. (3) Results: The study's findings show no statistically significant variations in preschool boys' and girls' motor skills. Preschool girls had better results in the right leg tapping than preschool boys t (98) = 2.08; p ≤ 0.04. We found a significant difference between genders aged 3-4, 4-5, and 5-6 years. No correlation was found between the girls' three variables and age. A small but significant positive correlation was found between dominant hand tapping and age r2 (52) = 0.21; p ≤ 0.01, dominant leg tapping and age r2 (52) = 0.20; p ≤ 0.01 and dominant HGS and age r2 (52) = 0.17; p ≤ 0.01. No noticeable differences were identified when comparing the dominant side with the non-dominant side in each group. The results show that most children prefer to use their right hand and right leg as their dominant sides. (4) Conclusion: The authors of this study focus on the functional (frequency of movements) and dynamic (differences in muscle strength between body sides) elements of asymmetry. Future studies should examine the influence of morphology on performance with the dominant or non-dominant body side.
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Affiliation(s)
- Almir Atiković
- Faculty of Physical Education and Sport, University of Tuzla, 2. Oktobra 1., 75000 Tuzla, Bosnia and Herzegovina
| | - Ekrem Čolakhodžić
- Faculty of Education, University Džemal Bijedić of Mostar, 88000 Mostar, Bosnia and Herzegovina
| | - Edin Užičanin
- Faculty of Physical Education and Sport, University of Tuzla, 2. Oktobra 1., 75000 Tuzla, Bosnia and Herzegovina
| | - Emilija Petković
- Faculty of Sport and Physical Education, University of Niš, 18000 Niš, Serbia
| | - Amra Nožinović Mujanović
- Faculty of Physical Education and Sport, University of Tuzla, 2. Oktobra 1., 75000 Tuzla, Bosnia and Herzegovina
| | - Edin Mujanović
- Faculty of Physical Education and Sport, University of Tuzla, 2. Oktobra 1., 75000 Tuzla, Bosnia and Herzegovina
| | - Jasmin Zahirović
- Faculty of Physical Education and Sport, University of Tuzla, 2. Oktobra 1., 75000 Tuzla, Bosnia and Herzegovina
| | - Naida Mešković
- Faculty of Physical Education and Sport, University of Tuzla, 2. Oktobra 1., 75000 Tuzla, Bosnia and Herzegovina
| | - Ana Lilić
- Faculty of Sport and Physical Education, University of Niš, 18000 Niš, Serbia
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Duran G, Bayraktar D, Kalkan AC, Turkucar S, Makay B, Unsal SE, Genc A. Investigating Wrist Joint Position Sense and Hand Functions in Children With Polyarticular Juvenile Idiopathic Arthritis With Wrist Involvement. Clin Pediatr (Phila) 2022:99228221147175. [PMID: 36579857 DOI: 10.1177/00099228221147175] [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] [Indexed: 12/30/2022]
Abstract
Comparing the wrist joint position sense and hand functions between children with juvenile idiopathic arthritis (JIA) and healthy controls, and determining possible relationships between these parameters in children with JIA were the aims of this study. Twenty children with polyarticular JIA with wrist involvement (JIAWrist+), 20 children with other subtypes of JIA without wrist involvement (JIAWrist-), and 20 healthy controls were included. Wrist joint position sense was evaluated by measuring joint repositioning error. Hand functions were assessed by using the Purdue Pegboard test, hand grip strength, pinch strength, and Duruoz Hand Index. Joint position sense and hand functions were diminished in the JIAWrist+ group compared with healthy control group (P < .05). Few moderate relationships were detected between hand functions and wrist joint position sense (P < .05). Improving proprioceptive acuity by appropriate training methods may have a role in enhancing hand functions.
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Affiliation(s)
- Gozde Duran
- Department of Physiotherapy and Rehabilitation, Institute of Health Sciences, Dokuz Eylül University, Izmir, Turkey
| | - Deniz Bayraktar
- Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Izmir Katip Celebi University, Izmir, Turkey
| | - Aybuke Cansu Kalkan
- Faculty of Physical Therapy and Rehabilitation, Dokuz Eylül University, Izmir, Turkey
| | - Serkan Turkucar
- Division of Pediatric Rheumatology, Department of Pediatrics, Faculty of Medicine, Dokuz Eylül University, Izmir, Turkey
| | - Balahan Makay
- Division of Pediatric Rheumatology, Department of Pediatrics, Faculty of Medicine, Dokuz Eylül University, Izmir, Turkey
| | - Sevket Erbil Unsal
- Division of Pediatric Rheumatology, Department of Pediatrics, Faculty of Medicine, Dokuz Eylül University, Izmir, Turkey
| | - Arzu Genc
- Faculty of Physical Therapy and Rehabilitation, Dokuz Eylül University, Izmir, Turkey
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Wesley A, Bray P, Pacey V, Chan C, Nicholson LL. Hand Impairment and Function in Children and Adolescents With Heritable Disorders of Connective Tissue. Am J Occup Ther 2022; 76:23963. [DOI: 10.5014/ajot.2022.049282] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/19/2022] Open
Abstract
Abstract
Importance: Heritable disorders of connective tissue (HDCTs) affect hand function and participation in daily activities for children and adolescents.
Objective: To describe hand impairment and function and determine the extent to which hand impairment and function explain the variation in self-reported functional performance.
Design: Cross-sectional observational study.
Setting: Specialist tertiary hospital.
Participants: Children and adolescents ages 8–18 yr with HDCTs (N = 73).
Intervention: None.
Outcomes and Measures: Hand function outcomes included grip strength (digital dynamometer), manipulation and dexterity (Functional Dexterity Test, Nine-Hole Peg Test), and fine motor skills (Bruininks–Oseretsky Test of Motor Proficiency). Upper limb hypermobility was assessed using the Upper Limb Hypermobility Assessment Tool. Hand pain and fatigue were recorded for a timed button test and 3- and 9-min handwriting tasks. Functional performance was measured using the Childhood Health Assessment Questionnaire.
Results: Scores on all hand function measures were below expected norms. Pain and fatigue were significantly worse after the writing tasks (p < .001) but not the button test (p > .40). Secondary students had significantly lower handwriting scores than primary students (p = .03) but similar grip strength z scores (p = .95). Variation in self-reported functional performance was explained by grip strength (6%) and upper limb hypermobility and dexterity (16%).
Conclusions and Relevance: Young people with HDCTs have poor hand function attributable to poor grip strength and hand pain and fatigue. Comprehensive upper limb evaluation and ongoing monitoring throughout the school years are warranted to inform timely intervention.
What This Article Adds: Children and adolescents with heritable disorders of connective tissue have difficulty with hand function that affect their participation in daily activities. The results of this study can help clinicians identify, assess, and monitor daily activities, performance skills, and symptoms of children and adolescents with HDCTs to promote their participation in all aspects of daily life.
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Affiliation(s)
- Alison Wesley
- Alison Wesley, MEd, BSc, GDipOT, is Senior Occupational Therapist, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia, and PhD Candidate, School of Medical Sciences, Faculty of Medicine, The University of Sydney, Sydney, New South Wales, Australia;
| | - Paula Bray
- Paula Bray, PhD, BOT (Hons), is Director of Research, Sydney Children’s Hospitals Network, Sydney, New South Wales, Australia, and Postdoctoral Fellow, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
| | - Verity Pacey
- Verity Pacey, PhD, BAppSci (Phty), is Associate Professor, Department of Health Sciences, Faculty of Medicine, Health and Human Sciences, Sydney, New South Wales, Australia
| | - Cliffton Chan
- Cliffton Chan, PhD, BPhysio (Hons), is Associate Professor, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia, and Senior Lecturer, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
| | - Leslie L. Nicholson
- Leslie L. Nicholson, PhD, BAppSc (Phty), is Associate Professor, School of Medical Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
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Thomas R, Dale M, Wicks S, Toose C, Pacey V. Reliability of a novel technique to assess palmar contracture in young children with unilateral hand injuries. J Hand Ther 2022; 35:254-260. [PMID: 35491302 DOI: 10.1016/j.jht.2022.03.004] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/26/2021] [Revised: 12/20/2021] [Accepted: 03/10/2022] [Indexed: 02/03/2023]
Abstract
BACKGROUND Palmar contracture in young children can have significant developmental consequences. Despite this, objective techniques to measure palmar range of movement and quantify contracture in young children are limited. PURPOSE The purpose of this study was to determine the reliability of hand span and hand length measures in young children and to establish whether there is any association with age, sex and presence of a palmar burn injury in the reliability of these measures. The study also sought to determine the normative difference and establish a cut off value for the between-hand difference to identify loss of movement in 1 hand. STUDY DESIGN Cross sectional METHODS: Forty-four children aged 0 to <5 years were recruited. Twenty-two children had a unilateral palmar burn injury and 22 did not have a palmar burn injury. Each child's hand span and hand length were measured 3 times. This was performed twice by the first assessor and once by the second assessor. Intraclass correlation coefficients were calculated to determine the intra-rater and inter-rater reliability. The largest of the 3 values for both hand span and hand length from the first assessor's first assessment were used to determine the normative between-hand difference. Outliers were removed prior to determining the normative difference. Children were considered outliers if their between-hand difference in hand span and/or hand length was in the top 5% of values. RESULTS Excellent reliability was established for hand span and hand length measures for the whole group (intra-rater ICC2,1 ≥0.95, inter-rater ICC2,1 ≥0.94). The mean normative between-hand difference for both measures was 2 mm. The cut-off for the normative difference in hand span was <9 mm and hand length was <6 mm. CONCLUSION This measurement technique has excellent reliability and could be a useful method to quantify palmar range of movement and identify contracture in young children with unilateral hand injuries.
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Affiliation(s)
- Rhianydd Thomas
- Department of Health Professions, Faculty of Medicine, Health and Human Sciences, Macquarie University, Macquarie University, New South Wales, Australia; Burns Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
| | - Marita Dale
- Discipline of Physiotherapy, Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, New South Wales, Australia
| | - Stephanie Wicks
- Burns Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Claire Toose
- Burns Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Verity Pacey
- Department of Health Professions, Faculty of Medicine, Health and Human Sciences, Macquarie University, Macquarie University, New South Wales, Australia
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Leblebici G, Ovacik U, Gungor F, Davids JR, Tarakci E, Kasapcopur O. Validity and reliability of "Shriners Hospital for Children Upper Extremity Evaluation" in children with rheumatic diseases. Clin Rheumatol 2021; 40:5033-5040. [PMID: 34350521 DOI: 10.1007/s10067-021-05866-6] [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: 05/12/2021] [Revised: 06/26/2021] [Accepted: 07/19/2021] [Indexed: 10/20/2022]
Abstract
INTRODUCTION/OBJECTIVES The aim of this study was to investigate the validity and reliability of "Shriners Hospital for Children Upper Extremity Evaluation (SHUEE)" for children with rheumatic diseases. METHODS The study was carried out after obtaining the necessary permissions and retrospectively registered. The psychometric properties evaluated were reliability and concurrent validity. Reliability was determined by intra- and inter-observer agreement. Concurrent validity was performed using the Jebsen Taylor Hand Function Test (JTHFT), Abilhand-Rheumatoid Arthritis (Abilhand-RA), and Children Health Assessment Questionnaire (CHAQ). The validity and reliability of the evaluation were determined after the retest 1 week later. RESULTS Twenty children with rheumatic diseases were participated in to study. Intraclass coefficients ranged from 0.82 to 0.97 and the intraobserver reliability for SHUEE total and subscales were considered "excellent." Interobserver reliability was considered "excellent" for the SHUUE total score, spontaneous functional analysis and dynamic positional analysis, and "moderate" for grasp-release. A moderate negative correlation was determined between Spontaneous Functional Analysis and JTHFT (r = - 0.63; p = 0.003). CONCLUSION SHUEE is a valid and reliable evaluation for children with rheumatic diseases. ClinicalTrials.org NCT04685434/21.12.2020 Key Points • SHUEE tends to be appropriate and acceptable to children with rheumatic diseases. • SHUEE can be used safely in the pediatric rheumatology group and it is beneficial in the clinical decision-making process. • SHUEE is a pioneering performance test that evaluates the quality of movement in pediatric rheumatology on a joint basis.
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Affiliation(s)
- Gokce Leblebici
- Division of Physiotherapy and Rehabilitation, Faculty of Health Science, Istanbul Medeniyet University, Dumlupınar, D100 No:98, Kadıköy, 34000, Istanbul, Turkey.
- Department of Physiotherapy and Rehabilitation, Institute of Graduate Studies, Istanbul University-Cerrahpasa, Istanbul, Turkey.
| | - Ugur Ovacik
- Department of Physiotherapy and Rehabilitation, Institute of Graduate Studies, Istanbul University-Cerrahpasa, Istanbul, Turkey
- Physiotherapy Program, Department of Medical Services and Techniques, Vocational School of Health Services, Istanbul Aydin University, Istanbul, Turkey
| | - Feray Gungor
- Department of Physiotherapy and Rehabilitation, Institute of Graduate Studies, Istanbul University-Cerrahpasa, Istanbul, Turkey
- Division of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Istanbul University-Cerrahpasa, Istanbul, Turkey
| | - Jon Robert Davids
- Pediatric Orthopedic Surgery, Motion Analysis Laboratory, Shriners Hospitals for Children-Northern California, Sacramento, CA, USA
| | - Ela Tarakci
- Division of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Istanbul University-Cerrahpasa, Istanbul, Turkey
| | - Ozgur Kasapcopur
- Cerrahpasa Medical School, Department of Pediatric Rheumatology, Istanbul University-Cerrahpasa, Istanbul, Turkey
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Tarakci E, Arman N, Tarakci D, Kasapcopur O. Leap Motion Controller-based training for upper extremity rehabilitation in children and adolescents with physical disabilities: A randomized controlled trial. J Hand Ther 2020; 33:220-228.e1. [PMID: 31010703 DOI: 10.1016/j.jht.2019.03.012] [Citation(s) in RCA: 41] [Impact Index Per Article: 8.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/25/2018] [Revised: 03/10/2019] [Accepted: 03/20/2019] [Indexed: 02/03/2023]
Abstract
STUDY DESIGN Randomized controlled trial. INTRODUCTION Juvenile idiopathic arthritis (JIA), cerebral palsy (CP), and brachial plexus birth injury (BPBI) are the most common disorders that cause upper extremity impairments in children and adolescents. Leap Motion Controller-based training (LMCBT) is a novel therapeutic method for upper extremity rehabilitation. PURPOSE OF THE STUDY The aim of the present study was to investigate the potential efficacy of an 8-week LMCBT program set as an upper extremity rehabilitation program by comparing conventional rehabilitation program in children and adolescents with physical disabilities such as JIA, CP, and BPBI. METHODS A randomized control trial which included children and adolescents of different disabilities (JIA, CP, BPBI) were grouped according to their diagnosis. All patients were randomized into 2 groups namely LMCBT (group I) and conventional treatment (group II) for the treatment (3 days/8 weeks). Duruoz Hand Index and Jebson Taylor Hand Function Test were used as primary outcomes. Secondary outcomes included the nine-hole peg test, Childhood Health Assessment Questionnaire, and assessments of grip and pinch strength using a dynamometer. RESULTS One hundred three patients were included in the study, and 92 of them completed the treatment. After treatment, significant differences were found in Childhood Health Assessment Questionnaire, Duruoz Hand Index, Jebson Taylor Hand Function Test, nine-hole peg test, and grip and pinch strength scores in almost all groups (effect size [ES] = 0.10 to -0.77 for group I and 0.09 to -0.70 for group II in CP; ES = 0.31 to 2.65 for the group I and 0.12 to 1.66 for group II in JIA; and ES = 0 to -0.44 for group I and 0.08 to -0.62 for group II in BPBI) (P < .05). Comparisons between LMCBT and conventional treatment groups showed similar results in all parameters in all disease groups (P > .05). CONCLUSIONS This study has quantitatively shown that LMCBT should be used as an effective alternative treatment option in children and adolescents with physical disabilities.
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Affiliation(s)
- Ela Tarakci
- Faculty of Health Sciences, Department of Neurological Physiotherapy and Rehabilitation, Istanbul University-Cerrahpasa, Bakirkoy, Istanbul, Turkey.
| | - Nilay Arman
- Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Istanbul University-Cerrahpasa, Bakirkoy, Istanbul, Turkey
| | - Devrim Tarakci
- Faculty of Health Sciences, Department of Ergotherapy, Istanbul Medipol University, Bakirkoy, Istanbul, Turkey
| | - Ozgur Kasapcopur
- Medical Faculty of Cerrahpasa, Department of Pediatric Rheumatology, Istanbul University-Cerrahpasa, Bakirkoy, Istanbul, Turkey
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12
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Mahmoud AG, Elhadidy EI, Hamza MS, Mohamed NE. Determining correlations between hand grip strength and anthropometric measurements in preschool children. J Taibah Univ Med Sci 2020; 15:75-81. [PMID: 32110186 PMCID: PMC7033396 DOI: 10.1016/j.jtumed.2020.01.002] [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: 11/02/2019] [Revised: 01/13/2020] [Accepted: 01/14/2020] [Indexed: 12/03/2022] Open
Abstract
Purpose We aimed to assess normal values of hand grip strength in preschool children and to determine their correlations with anthropometric measurements. Methods According to (Indira and Rajeswari, 2015) a pilot study was performed before the current study in order to confirm the variation in values of grip strength in age ranged from 3-6 years old. Therefore, ten children from each age group was assigned and it showed a significant changes in the measurements of grip strength corresponding to the age. Thus, it was important to assign them to three groups based on age so the first group from 3 to 4 years old, the second group from 4 to 5 years old, the third group from 5 to 6 years old. Results The study included 636 normal preschool-age children. Grip strengths with the dominant hand were 26.87 ± 6.77 kPa, 29.78 ± 8.43 kPa, and 38.04 ± 8.55 kPa in the 3–4, 4–5, and 5–6 years age groups, respectively. With the non-dominant hand, grip strengths were 25.03 ± 7.19 kPa, 28.13 ± 8.43 kPa, and 33.74 ± 8.14 kPa, respectively. In the 3–4 years group, there were negative significant correlations between grip strength of the dominant hand and forearm circumference (FC) or hand circumference (HC). However, we found a positive non-significant correlation with hand length (HL). Grip strength of the non-dominant hand showed a negative significant correlation with FC, a positive non-significant correlation with HC, and a positive significant correlation with HL. Grip strength of both dominant and non-dominant hands in the 4–5 years group showed moderately positive significant correlations with all anthropometric measurements. Grip strength of both dominant and non-dominant hands in the 5–6 years group showed weak positive significant correlations with FC and moderate positive significant correlations with HC and HL. Conclusion This study established normal values of grip strength and demonstrated positive significant correlations between grip strength and FC, HC, and HL with increasing age in preschool children.
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Affiliation(s)
- Amira G Mahmoud
- Faculty of Physical Therapy, Misr University for Science and Technology, Giza, Egypt
| | | | - Mohamed S Hamza
- Faculty of Medicine, Misr University for Science and Technology, Giza, Egypt
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13
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Chomistek K, Johnson N, Stevenson R, Luca N, Miettunen P, Benseler SM, Veeramreddy D, Schmeling H. Patient-Reported Barriers at School for Children with Juvenile Idiopathic Arthritis. ACR Open Rheumatol 2019; 1:182-187. [PMID: 31777793 PMCID: PMC6858049 DOI: 10.1002/acr2.1023] [Citation(s) in RCA: 17] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/10/2022] Open
Abstract
Objective The objective of this study was to identify patient‐reported school barriers and their associated impact in juvenile idiopathic arthritis (JIA). Methods A cross‐sectional observational study of children aged 8 to 17, diagnosed with JIA, and followed in the rheumatology clinic/Alberta Children's Hospital was performed. Demographics, diagnosis, and disease course were obtained from health records. A questionnaire was administered to the child to assess the barriers experienced by JIA patients at school. The questionnaire collected information about school attendance/performance, impact of JIA symptoms (eg, pain and fatigue), physical challenges and accommodations, communication, participation and peers, and school support. Descriptive statistics were used to analyze the data. Results A total of 98 children with JIA were recruited into the study. The median age of participants was 13 years (interquartile range 11‐15). The JIA subtypes in this cohort reflected the normal JIA distribution. Physical challenges at school (eg, gym, writing, and sitting for long periods of time) were reported by 42.1% of patients. Accommodations (eg, modified gym, accommodation letter, and computer access) were used by 23% of patients. The inability to participate in activities in class or outside with their peers occurred for 32.2% of patients and in gym for 40.7% of patients. Social concerns included embarrassment from talking about their illness, worry regarding being treated differently, and being told they were fabricating their illness. Conclusion Children with JIA experienced barriers at school, especially physical challenges, with a need for accommodations in a proportion of children. Decreased participation and increased social anxiety were additional key barriers.
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Affiliation(s)
| | | | | | - Nadia Luca
- University of Calgary Calgary Alberta Canada
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14
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Arman N, Tarakci E, Tarakci D, Kasapcopur O. Effects of Video Games-Based Task-Oriented Activity Training (Xbox 360 Kinect) on Activity Performance and Participation in Patients With Juvenile Idiopathic Arthritis: A Randomized Clinical Trial. Am J Phys Med Rehabil 2019; 98:174-181. [PMID: 30020092 DOI: 10.1097/phm.0000000000001001] [Citation(s) in RCA: 28] [Impact Index Per Article: 4.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/23/2023]
Abstract
OBJECTIVE The aim of the study was to compare the effects of two different task-oriented activity training programs on activity performance and participation in children/adolescents with juvenile idiopathic arthritis. DESIGN Sixty-two patients were randomized into group I and group II for task-oriented activity training. In group I, activities of daily living were practiced using real materials from daily life, and in group II, activities of daily living were practiced using video-based games (Xbox 360 Kinect) for 3 d/wk for 8 wks. Pain by the Numeric Rating Scale, upper limb muscle, grip, and pinch strengths by a dynamometer, activity performance and participation by the Childhood Health Assessment Questionnaire, Canadian Occupational Performance Measure, and Duruoz Hand Index were evaluated. RESULTS After treatment in both groups, significant changes were found in the Numeric Rating Scale, muscle strength, grips strength, Childhood Health Assessment Questionnaire, Canadian Occupational Performance Measure, and Duruoz Hand Index (P < 0.05). Group II was statistically superior to group I in changes of almost all upper limb muscle strengths, palmar pinch strength, Canadian Occupational Performance Measure satisfaction, and Duruoz Hand Index scores (P < 0.05). CONCLUSION Video games-based task-oriented activity training is an alternative and feasible treatment for children/adolescents with juvenile idiopathic arthritis. This new method may have widespread applicability in future research, given the rapidly growing interest in virtual reality-based therapy in rehabilitation. TO CLAIM CME CREDITS Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME OBJECTIVES: Upon completion of this article, the reader should be able to: (1) Understand the rehabilitation benefits of task-oriented activity in patients with neurologic and musculoskeletal conditions; (2) Appreciate the role of video games-based task oriented activity in rehabilitation; and (3) Appropriately incorporate video games-based task oriented activity in the rehabilitation program of individuals with Juvenile Idiopathic Arthritis. LEVEL Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.
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Affiliation(s)
- Nilay Arman
- From the Department of Physiotherapy and Rehabilitation, Division of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Istanbul University-Cerrahpasa, Istanbul, Turkey (NA); Department of Neurological Physiotherapy and Rehabilitation, Division of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Istanbul University-Cerrahpasa, Istanbul, Turkey (ET); Division of Ergotherapy, Faculty of Health Sciences, Istanbul Medipol University, Istanbul, Turkey (DT); and Department of Pediatric Rheumatology, Medical Faculty of Cerrahpasa Istanbul University-Cerrahpasa, Istanbul, Turkey (OK)
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15
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Warnink-Kavelaars J, Beelen A, Goedhart TMHJ, de Koning LE, Nollet F, Alsem MW, Menke LA, Engelbert RHH. Marfan syndrome in adolescence: adolescents' perspectives on (physical) functioning, disability, contextual factors and support needs. Eur J Pediatr 2019; 178:1883-1892. [PMID: 31620888 PMCID: PMC6881250 DOI: 10.1007/s00431-019-03469-7] [Citation(s) in RCA: 18] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/12/2019] [Revised: 09/10/2019] [Accepted: 09/10/2019] [Indexed: 12/11/2022]
Abstract
Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents' perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were "difficulties in keeping up with peers" and "being and feeling different from peers". Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.Conclusion: Adolescents with Marfan syndrome perceived limitations and restrictions in (physical) functioning. They perceived problems in keeping up with peers and perceived to differ from peers due to their appearance and disability. This warrants awareness and tailored physical, psychosocial, educational and environmental support programmes to improve (physical) functioning and empowerment of adolescents with Marfan syndrome.What is known:• Marfan syndrome is a hereditary connective tissue disorder.• Marfan syndrome affects multiple systems.What is new:• Adolescents with Marfan syndrome perceive (1) problems in keeping up with peers in school, sports, leisure, friendships/relationships and work (2) to differ from peers due to their appearance and disability.• An adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and contextual factors.
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Affiliation(s)
- Jessica Warnink-Kavelaars
- Amsterdam UMC, University of Amsterdam, Rehabilitation, Amsterdam Movement Sciences, Meibergdreef 9, PO 22660, 1100 DD, Amsterdam, Netherlands.
| | - Anita Beelen
- grid.7177.60000000084992262Amsterdam UMC, University of Amsterdam, Rehabilitation, Amsterdam Movement Sciences, Meibergdreef 9, PO 22660, 1100 DD Amsterdam, Netherlands ,grid.7692.a0000000090126352Department of Rehabilitation, Physical Therapy Science & Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, the Netherlands ,grid.7692.a0000000090126352Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands
| | - Tine M. H. J. Goedhart
- grid.7177.60000000084992262Amsterdam UMC, University of Amsterdam, Rehabilitation, Amsterdam Movement Sciences, Meibergdreef 9, PO 22660, 1100 DD Amsterdam, Netherlands
| | - Lisanne E. de Koning
- grid.431204.0ACHIEVE, Center of Applied Research, Amsterdam University of Applied Sciences, Faculty of Health, Amsterdam, the Netherlands
| | - Frans Nollet
- grid.7177.60000000084992262Amsterdam UMC, University of Amsterdam, Rehabilitation, Amsterdam Movement Sciences, Meibergdreef 9, PO 22660, 1100 DD Amsterdam, Netherlands
| | - Mattijs W. Alsem
- grid.7177.60000000084992262Amsterdam UMC, University of Amsterdam, Rehabilitation, Amsterdam Movement Sciences, Meibergdreef 9, PO 22660, 1100 DD Amsterdam, Netherlands
| | - Leonie A. Menke
- grid.7177.60000000084992262Amsterdam UMC, University of Amsterdam, Pediatrics, Meibergdreef 9, Amsterdam, Netherlands
| | - Raoul H. H. Engelbert
- grid.7177.60000000084992262Amsterdam UMC, University of Amsterdam, Rehabilitation, Amsterdam Movement Sciences, Meibergdreef 9, PO 22660, 1100 DD Amsterdam, Netherlands ,grid.431204.0ACHIEVE, Center of Applied Research, Amsterdam University of Applied Sciences, Faculty of Health, Amsterdam, the Netherlands ,grid.7177.60000000084992262Amsterdam UMC, University of Amsterdam, Pediatrics, Meibergdreef 9, Amsterdam, Netherlands
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16
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Rashed AM, Abdel-Wahab N, Moussa EMM, Hammam N. Association of hand grip strength with disease activity, disability and quality of life in children and adolescents with Juvenile Idiopathic Arthritis. Adv Rheumatol 2018; 58:11. [PMID: 30657067 DOI: 10.1186/s42358-018-0012-1] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/30/2018] [Accepted: 06/01/2018] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Juvenile idiopathic arthritis (JIA) affects wrist and hand joints leading to decrease hand function and patients' daily living activities. The assessment of hand grip strength (HGS) in children and adolescents with JIA is of major importance, and the association of HGS with JIA disease activity, disability and quality of life has not been explored. The primary objective of this study was to evaluate hand grip strength (HGS) in children and adolescents with Juvenile Idiopathic Arthritis (JIA) compared to matched healthy peers. The secondary objective was to explore the relationship between HGS and JIA disease activity, disability, and quality of life. METHODS This study involved 23 patients with JIA and 46 age and sex matched healthy controls. Hand held dynamometer was used to evaluate HGS for all study participants. Anthropometric parameters for all study participants were measured. Disease activity, physical function, and quality of life were assessed for the JIA group using juvenile arthritis disease activity score (JADAS-27), juvenile arthritis functionality scale (JAFS), and pediatric quality of life inventory (PedsQL) respectively. Laboratory marker of inflammation, erythrocyte sedimentation rate (ESR), and plain radiography of hands were performed for all patients. RESULTS Hand grip strength of children and adolescents with JIA was significantly weaker compared to matched controls (p < 0.001). Hand grip strength had a significant inverse correlation with JADAS-27 (r = - 0.467, p = 0.025), JAFS (r = - 0.650, p = 0.001) and a significant direct correlation with PedsQL (r = 0.438, p = 0.036). In addition, HGS was negatively correlated with ESR and duration of morning stiffness (r = - 0.489, p = 0.018 and r = - 0.201, p = 0.359, respectively). HGS was detected as an independent predictor of disease activity, disability, and quality of life in JIA patients in multivariate linear regression. CONCLUSIONS Assessment of HGS could be a simple non-invasive tool for assessing disease activity, disability and quality of life in JIA patients in clinical practice.
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Affiliation(s)
- Ahmed Mohammed Rashed
- Rheumatology and Rehabilitation Department, Faculty of Medicine, Assiut University, Assiut, Egypt
| | - Noha Abdel-Wahab
- Rheumatology and Rehabilitation Department, Faculty of Medicine, Assiut University, Assiut, Egypt.,Section of Rheumatology and Clinical Immunology, Department of General Internal Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA
| | - Ehab M M Moussa
- Department of Radiology, Assiut University Hospitals, Assiut, Egypt
| | - Nevin Hammam
- Rheumatology and Rehabilitation Department, Faculty of Medicine, Assiut University, Assiut, Egypt. .,Department of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Corbett Hall, 8205 114 Street, Edmonton, AB, T6G2G4, Canada.
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17
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Chen CY, McGee CW, Rich TL, Prudente CN, Gillick BT. Reference values of intrinsic muscle strength of the hand of adolescents and young adults. J Hand Ther 2018; 31:348-356. [PMID: 28807597 PMCID: PMC5955806 DOI: 10.1016/j.jht.2017.05.012] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/17/2017] [Revised: 04/28/2017] [Accepted: 05/24/2017] [Indexed: 02/09/2023]
Abstract
STUDY DESIGN A cross-sectional clinical measurement study. INTRODUCTION Measuring intrinsic hand muscle strength helps evaluate hand function or therapeutic outcomes. However, there are no established normative values in adolescents and young adults between 13 and 20 years of age. PURPOSE OF THE STUDY To measure hand intrinsic muscle strength and identify associated factors that may influence such in adolescents and young adults through use of the Rotterdam intrinsic hand myometer. METHODS A total of 131 participants (male: 63; female: 68) between 13 and 20 years of age completed the strength measurements of abductor pollicis brevis, first dorsal interosseus (FDI), deep head of FDI and lumbrical of second digit, flexor pollicis brevis (FPB), and abductor digiti minimi. Two trials of the measurements of each muscle were averaged for analyses. Self-reported demographic data were used to examine the influences of age, sex, and body mass index (BMI) on intrinsic hand muscle strength. RESULTS Normative values of intrinsic hand muscle strength were presented by age groups (13, 14, 15-16, 17-18, 19-20 year olds) for each sex category (male, female). A main effect of sex, but not age, on all the muscles on both the dominant (FPB: P = .02, others: P < .001) and non-dominant (FDI: P = .005, FPB: P = .01, others: P < .001) sides was found. A significant effect of BMI was found on dominant (P = .009) and non-dominant abductor pollicis brevis (P = .002). In addition, FDI (P = .005) and FPB (P = .002) were stronger on the dominant side than the non-dominant side. DISCUSSION Intrinsic hand muscle strength may be influenced by different factors including sex, BMI, and hand dominance. A larger sample is needed to rigorously investigate the influence of age on intrinsic strength in male and female adolescents and young adults. CONCLUSION The results provide reference values and suggest factors to be considered when evaluating hand function and therapeutic outcomes in both clinical and research settings. Further study is recommended. LEVEL OF EVIDENCE VI.
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Affiliation(s)
- Chao-Ying Chen
- Department of Physical Medicine and Rehabilitation, Medical School, University of Minnesota, Minneapolis, MN, USA,Corresponding author. Department of Rehabilitation Medicine, Medical School, University of Minnesota, MMC 388, 420 Delaware Street SE, Minneapolis, MN 55455, USA. Tel.: 612-626-3121; fax: 612-625-4274., (C.-Y. Chen)
| | - Corey W. McGee
- Department of Rehabilitation Medicine Programs in Rehabilitation Science, University of Minnesota, Minneapolis, MN, USA
| | - Tonya L. Rich
- Department of Rehabilitation Medicine, Medical School, University of Minnesota, Minneapolis, MN, USA
| | - Cecília N. Prudente
- Department of Rehabilitation Medicine, Medical School, University of Minnesota, Minneapolis, MN, USA
| | - Bernadette T. Gillick
- Department of Rehabilitation Medicine, Medical School, University of Minnesota, Minneapolis, MN, USA
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18
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Morgan EM, Mara CA, Huang B, Barnett K, Carle AC, Farrell JE, Cook KF. Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS ®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Qual Life Res 2016; 26:565-586. [PMID: 27913986 DOI: 10.1007/s11136-016-1468-2] [Citation(s) in RCA: 55] [Impact Index Per Article: 6.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/25/2016] [Indexed: 01/17/2023]
Abstract
BACKGROUND Patient-Reported Outcomes Measurement Information System (PROMIS) measures are used increasingly in clinical care. However, for juvenile idiopathic arthritis (JIA), scores lack a framework for interpretation of clinical severity, and minimally important differences (MID) have not been established, which are necessary to evaluate the importance of change. METHODS We identified clinical severity thresholds for pediatric PROMIS measures of mobility, upper extremity function (UE), fatigue, and pain interference working with adolescents with JIA, parents of JIA patients, and clinicians, using a standard setting methodology modified from educational testing. Item parameters were used to develop clinical vignettes across a range of symptom severity. Vignettes were ordered by severity, and panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut-points (i.e., from none/mild problems to moderate/severe). To define MIDs, panelists reviewed a full score report for the vignettes and indicated which items would need to change and by how much to represent "just enough improvement to make a difference." RESULTS For fatigue and UE, cut-points among panels were within 0.5 SD of each other. For mobility and pain interference, cut-scores among panels were more divergent, with parents setting the lowest cut-scores for increasing severity. The size of MIDs varied by stakeholders (parents estimated largest, followed by patients, then clinicians). MIDs also varied by severity classification of the symptom. CONCLUSIONS We estimated clinically relevant severity cut-points and MIDs for PROMIS measures for JIA from the perspectives of multiple stakeholders and found notable differences in perspectives.
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Affiliation(s)
- Esi M Morgan
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA. .,Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, MLC 4010, Cincinnati, OH, 45229, USA. .,James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
| | - Constance A Mara
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.,Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Bin Huang
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.,Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Kimberly Barnett
- Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, MLC 4010, Cincinnati, OH, 45229, USA
| | - Adam C Carle
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.,Department of Psychology, University of Cincinnati College of Arts and Sciences, Cincinnati, OH, USA
| | - Jennifer E Farrell
- Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, MLC 4010, Cincinnati, OH, 45229, USA
| | - Karon F Cook
- Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA
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Farr S, Girsch W. The Hand and Wrist in Juvenile Rheumatoid Arthritis. J Hand Surg Am 2015; 40:2289-92. [PMID: 26272796 DOI: 10.1016/j.jhsa.2015.06.111] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/24/2015] [Revised: 06/16/2015] [Accepted: 06/21/2015] [Indexed: 02/02/2023]
Affiliation(s)
- Sebastian Farr
- Department of Pediatric Orthopaedics, Deformity Correction and Adult Foot and Ankle Surgery, Orthopaedic Hospital Speising, Vienna, Austria.
| | - Werner Girsch
- Department of Pediatric Orthopaedics, Deformity Correction and Adult Foot and Ankle Surgery, Orthopaedic Hospital Speising, Vienna, Austria
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