Publications by authors named "Janet L Poole"

60 Publications

The association between hand disease severity and fatigue in individuals with systemic sclerosis: a scoping review.

Disabil Rehabil 2021 Aug 13:1-7. Epub 2021 Aug 13.

Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.

Background: Hand disease severity in people with systemic sclerosis (SSc) arises from connective tissue and vascular changes causing functional limitations, pain, and disability. Fatigue is not well-understood in SSc and reported to be highly distressing. It is not known how fatigue relates to these disease changes. The objective of this study was to identify which elements of hand disease severity contribute to fatigue in individuals with SSc.

Methods: Five online databases and Google Scholar were searched to identify publications through 2021 presenting data related to hand disease severity and fatigue.

Results: Five articles met the inclusion criteria. The samples were 72-91% female, and 35-100% with diffuse SSc. Measures of disease severity included skin thickening (modified Rodnan score), joint involvement (mobility, tenderness, swelling), and digital ulcers. Fatigue was measured by various self-report. Joint involvement was strongly associated with fatigue. Skin thickening weakly associated with fatigue. The perceived interference of digital ulcers in daily activities was related to fatigue.

Conclusions: Few studies have examined how fatigue relates to hand disease severity. While joint involvement was associated with fatigue over time and in cross-sectional studies, digital ulcers may be associated with fatigue indirectly. A conceptual model is proposed with implications for future research.Implications for RehabilitationStructural disease changes that manifest in the hands, is often associated with pain, disability, and fatigue in SSc.Fatigue is one of the most distressing symptoms of SSc and reported by 61-90% of individuals with SSc, but is not well characterized.Of measures of hand disease severity, joint involvement (contractures, swollen and tender joints) is most associated with fatigue in individuals with SSc and more so if pain is involved.A better understanding of the physiological features of disease and fatigue could provide insight into development of fatigue management interventions and help rheumatology providers work with patients to manage their fatigue.Rehabilitation assessments and interventions for hand disability need to be considered as important elements in improving all elements of quality of life for individuals with systemic sclerosis.
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http://dx.doi.org/10.1080/09638288.2021.1958016DOI Listing
August 2021

Fatigue Predicts Future Reduced Social Participation, not Reduced Physical Function or Quality of Life in People with Systemic Sclerosis.

J Scleroderma Relat Disord 2021 Jun 20;6(2):187-193. Epub 2020 Sep 20.

Rheumatology Division, Department of Internal Medicine, University of Michigan.

Objective: Although fatigue is one of the most problematic symptoms for people with systemic sclerosis, little is known about how fatigue impacts daily life over time. Such information is important when developing fatigue management interventions. This study was conducted to examine 1) if fatigue severity predicted outcomes of worse functioning (social participation, physical function), and quality of life and 2) if level of self-efficacy moderated significant relationships between fatigue and these outcomes.

Methods: Data were utilized from a clinical trial in which an online self-management intervention was tested (N = 267). Fatigue, social participation, and physical function were assessed by PROMIS measures. Quality of life was assessed by the EuroQol 5-domain instrument (EQ-5D-5L). Linear regressions were performed to examine how baseline fatigue related to functioning and quality of life outcomes 16 weeks later controlling for relevant covariates. PROMIS measures were used to measure self-efficacy in managing symptoms, daily activities, medications and treatments, emotions, and social interactions.

Results: Fatigue at baseline significantly predicted social participation 16 weeks later; but did not predict physical functioning or quality of life. Self-efficacy variables did not moderate the association between fatigue and social participation.

Conclusion: Fatigue severity predicted decreased social participation in people with systemic sclerosis. Interventions targeting fatigue should include support to maintain participation of social roles and activities. The level of reported self-efficacy did not vary the strength of the association between fatigue and decline in social participation indicating that there may be other targets to treat fatigue intervention beyond self-management.

Trial Registration: NCT02494401.
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http://dx.doi.org/10.1177/2397198320965383DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320783PMC
June 2021

Suitability for e-health of non-pharmacological interventions in connective tissue diseases: scoping review with a descriptive analysis.

RMD Open 2021 Jul;7(2)

Section for Outcomes Research, Medical University of Vienna, Vienna, Austria

Objective: Non-pharmacological interventions support patients with connective tissue diseases to better cope with and self-manage their diseases. This study aimed to map existing evidence on non-pharmacological interventions in patients with systemic lupus erythematosus (SLE), systemic sclerosis (SSc) and mixed connective tissue diseases regarding content, feasibility and potential suitability in an e-health setting.

Methods: A literature search was performed in eight different databases in July 2020. The intervention's content was extracted using the 'Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide'. A Sankey diagram and descriptive statistics were used to analyse the data and illustrate the relationships between the interventions.

Results: Of 8198 identified records, 119 papers were eligible. One hundred and four of them (87.4%) were conducted between 2000 and 2020, mainly in the USA (SLE n=24 (21.2%), SSc n=16 (14.2%)), Brazil (SLE n=8 (7.1%), SSc n=5 (4.4%)) and Italy (SLE n=0 (0%), SSc n=12 (10.6%)). Fifty-two studies (SLE n=24 (21.2%), SSc n=28 (24.8%)) used multicomponent interventions. The single interventions were physical exercises (SLE n=16 (14.2%), SSc n=17 (15.0%)), coaching/counselling (SLE n=11 (18.0%), SSc n=0 (0%)) and education (SLE n=2 (1.8%), SSc n=3 (2.7%)). Primary outcomes focused on physical function (SLE n=1 (0.9%), SSc n=15 (13.3%)), mouth opening in SSc (n=4 (5.9%)) and physical capacity (SLE n=2 (1.8%), SSc n=1 (0.9%)). No interventions for mixed connective tissue disease were found.

Conclusion: There was a great variety in the intervention's content due to differences in body structure, activity limitations and participation restrictions in SLE and SSc. These results highlight the need for personalised, multicomponent, non-pharmacological interventions, which could be delivered as e-health interventions.
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http://dx.doi.org/10.1136/rmdopen-2021-001710DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8323400PMC
July 2021

Exercise as a multi-modal disease-modifying medicine in systemic sclerosis: An introduction by The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis (G-FoRSS).

Best Pract Res Clin Rheumatol 2021 Jun 30:101695. Epub 2021 Jun 30.

New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, USA; Tulane University School of Medicine, New Orleans, USA; University Medical Center - Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, New Orleans, USA; Louisiana State University School of Medicine, Section of Pulmonary Medicine, New Orleans, USA. Electronic address:

Systemic sclerosis (SSc) is a heterogeneous multisystem autoimmune disease whereby its main pathological drivers of disability and damage are vascular injury, inflammatory cell infiltration, and fibrosis. These mechanisms result in diffuse and diverse impairments arising from ischemic circulatory dysfunction leading to painful skin ulceration and calcinosis, neurovascular aberrations hindering gastrointestinal (GI) motility, progressive painful, incapacitating or immobilizing effects of inflammatory and fibrotic effects on the lungs, skin, articular and periarticular structures, and muscle. SSc-related impairments impede routine activities of daily living (ADLs) and disrupt three critical life areas: work, family, social/leisure, and also impact on psychological well-being. Physical activity and exercise are globally recommended; however, for connective tissue diseases, this guidance carries greater impact on inflammatory disease manifestations, recovery, and cardiovascular health. Exercise, through myogenic and vascular phenomena, naturally targets key pathogenic drivers by downregulating multiple inflammatory and fibrotic pathways in serum and tissue, while increasing circulation and vascular repair. G-FoRSS, The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis recognizes the scientific basis of and advocates for education and research of exercise as a systemic and targeted SSc disease-modifying treatment. An overview of biophysiological mechanisms of physical activity and exercise are herein imparted for patients, clinicians, and researchers, and applied to SSc disease mechanisms, manifestations, and impairment. A preliminary guidance on exercise in SSc, a research agenda, and the current state of research and outcome measures are set forth.
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http://dx.doi.org/10.1016/j.berh.2021.101695DOI Listing
June 2021

Rehabilitation Interventions in Systemic Sclerosis: A Systematic Review and Future Directions.

Arthritis Care Res (Hoboken) 2021 Jun 23. Epub 2021 Jun 23.

Michigan Scleroderma Program, University of Michigan, Ann Arbor, Michigan, USA.

Objective: To systematically review evidence of rehabilitation interventions for improving outcomes in systemic sclerosis (SSc) and to evaluate evidence quality.

Methods: Several electronic databases were searched to identify studies in which rehabilitation professionals delivered, supervised, or participated in interventions for individuals with SSc. Randomized (RCTs) or non-randomized trials, one-arm trials, and prospective quasi-experimental studies with interventions were included if they had ≥ 10 participants. Quality appraisal was done by two independent raters using the Physiotherapy Evidence Database (PEDro) Scale.

Results: Sixteen good or excellent quality studies (15 RCTs, 1 prospective quasi-experimental study) were included. Most rehabilitation interventions focused on hands/upper extremities, followed by multicomponent, orofacial, and directed self-management. Sample sizes varied between 20 - 267 participants (median = 38). In 50% of studies, participants in intervention groups significantly improved compared to controls. Most studies demonstrated within-group improvements in intervention groups. Interventions varied in content, delivery, length, and dose and outcome measures collected.

Conclusion: Existing evidence provides some support for rehabilitation in SSc, such as interventions that focus on hand and upper extremity outcomes or are multicomponent, although there is high study heterogeneity. The evidence base would benefit from interventions testing similar replicable components, use of common outcome measures, and incorporation of delivery modes that enable larger sample sizes. There are challenges in recruiting participants due to SSc's rarity and involving participants in rehabilitation studies that require active participation over time due to high disease burden. Intervention studies designed to reduce participation barriers may facilitate translation of effective interventions into practice.
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http://dx.doi.org/10.1002/acr.24737DOI Listing
June 2021

Sustained efficacy of a concise self-management programme for hands in systemic sclerosis: a longitudinal case-control observational study.

Rheumatology (Oxford) 2020 11;59(11):3330-3339

Department of Orthopedics and Rheumatology, University of Campinas-Unicamp, Campinas, SP, Brazil.

Objectives: In a longitudinal case-control observational study, we evaluated the benefits of a self-management programme for hands developed for patients with SSc.

Methods: Patients with SSc included in the intervention group (IG) received a concise self-management programme with emphasis on hand exercises and were evaluated during 24 weeks regarding hand pain, hand function, range of motion, grip and tip and key pinch strength. Results were compared with a control group (CG) with no intervention using an analysis of variance for repeated measures with variables transformed into ranks (P ≤ 0.05). Effect sizes were calculated using Cohen's test.

Results: Of 90 patients who were evaluated, seven were excluded at enrolment and 26 were excluded during the follow-up. Data from 57 subjects (IG 40, CG 17) were used for analysis. Groups were similar at baseline, except for the Scleroderma HAQ and tip and key pinch strength. Outcome improvements were noted only in the IG (P ≤ 0.05, large effect size). In the CG, variables did not change or had even worsened (hand grip strength and finger motion).

Conclusions: This self-management programme based on hand exercises for SSc resulted in pain reduction and hand function, strength and range of motion improvement. It can be a simple and useful intervention, especially when a regular rehabilitation programme is not available.
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http://dx.doi.org/10.1093/rheumatology/keaa140DOI Listing
November 2020

Fatigue and Its Association With Social Participation, Functioning, and Quality of Life in Systemic Sclerosis.

Arthritis Care Res (Hoboken) 2021 03 5;73(3):415-422. Epub 2021 Feb 5.

University of Michigan, Ann Arbor, USA.

Objective: Fatigue is consistently ranked as one of the most problematic symptoms of systemic sclerosis (SSc), but the impact of fatigue on daily life is not well characterized. The purpose of this study was to examine the contribution of fatigue to deficits in social participation, functioning, and quality of life.

Methods: Baseline data from a sample undertaking a clinical trial were utilized (n = 267). Fatigue, pain interference, depressive symptoms, physical function, and social participation were assessed by measures from the Patient-Reported Outcomes Measurement Information System. Hierarchical linear regressions were performed to determine the unique contribution of fatigue to social participation, physical function, and quality of life above and beyond the effects of demographic and clinical variables, pain interference, and depressive symptoms.

Results: The sample was predominantly female (91%), with an average age of 53.7 years, average disease duration of 9 years, and a mean fatigue T score of 58.7. Of all outcomes, fatigue was most strongly associated with deficits in social participation, explaining 48% of the variance beyond demographic and clinical factors, which is similar to the amount of variance contributed by pain interference and depressive symptoms combined (49%). Fatigue also accounted for significant amounts of variance in physical function and quality of life (R = 0.27 and 0.33, respectively) above and beyond the effects of demographic and clinical factors.

Conclusion: Fatigue is an important clinical problem in SSc and is strongly associated with decreased participation in social roles and activities. Rehabilitation interventions that focus on fatigue management may be necessary to maximize participation.
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http://dx.doi.org/10.1002/acr.24122DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7295677PMC
March 2021

Effectiveness of Occupational Therapy Interventions for Adults With Systemic Lupus Erythematosus: A Systematic Review.

Am J Occup Ther 2019 Jul/Aug;73(4):7304205020p1-7304205020p21

Patricia Siegel, OTD, OTR/L, CHT, is Assistant Professor, Occupational Therapy Graduate Program, University of New Mexico, Albuquerque.

Objective: Our objective was to assess the efficacy of occupational therapy-related interventions for adults with systemic lupus erythematosus (SLE).

Method: We reviewed intervention studies published from 2000 to 2017. The method used for conducting the review was based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The PEDro scale was used to evaluate methodological quality. Risk of bias was appraised with methods described by the Cochrane Methods Group.

Results: The final analysis included 20 studies (10 physical activity and 10 psychoeducational). Moderate evidence supports physical activity to improve depression, fatigue, exercise tolerance, and function without exacerbation of disease symptoms. Strong evidence supports psychoeducational interventions using cognitive-behavioral approaches to improve pain, depression, anxiety, perceived stress, quality of life, and function. Moderate evidence supports patient education and self-management interventions for pain, depression, anxiety, perceived stress, quality of life, and function.

Conclusion: Further research on occupation-based interventions for people with SLE is needed.
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http://dx.doi.org/10.5014/ajot.2019.030619DOI Listing
July 2019

Occupational Therapy Interventions for Adults With Fibromyalgia.

Am J Occup Ther 2018 Sep/Oct;72(5):7205395010p1-7205395010p4

Janet L. Poole, PhD, OTR/L, FAOTA, is Professor and Program Director, Occupational Therapy Graduate Program, University of New Mexico, Albuquerque;

Evidence Connection articles provide a clinical application of systematic reviews developed in conjunction with the American Occupational Therapy Association's (AOTA's) Evidence-Based Practice Project. In this Evidence Connection article, we describe a case report of a person recently diagnosed with fibromyalgia. The occupational therapy assessment and intervention process in the home setting is described. Findings from the systematic review (Poole & Siegel, 2017) on this topic were published in the January/February 2017 issue of the American Journal of Occupational Therapy and in AOTA's Occupational Therapy Practice Guidelines for Adults With Arthritis and Other Rheumatic Conditions (Poole et al., 2017). Each article in this series summarizes the evidence from the published reviews on a given topic and presents an application of the evidence to a related clinical case. Evidence Connection articles illustrate how the research evidence from the reviews can be used to inform and guide clinical reasoning.
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http://dx.doi.org/10.5014/ajot.2018.725002DOI Listing
November 2018

Randomized Controlled Trial to Evaluate an Internet-Based Self-Management Program in Systemic Sclerosis.

Arthritis Care Res (Hoboken) 2019 03 5;71(3):435-447. Epub 2019 Feb 5.

University of New Mexico, Albuquerque.

Objective: In a pilot study, our group showed that an internet-based self-management program improves self-efficacy in systemic sclerosis (SSc). The objective of the current study was to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in patients with SSc.

Methods: We conducted a 16-week randomized, controlled trial.

Results: Of the 267 participants who completed baseline questionnaires and were randomized to the intervention (internet: www.selfmanagescleroderma.com) or control (book) group, 123 participants (93%) in the internet group and 124 participants (94%) in the control group completed the 16-week randomized controlled trial (RCT). The mean ± SD age of all participants was 53.7 ± 11.7 years, 91% were women, and 79.4% had some college or a higher degree. The mean ± SD disease duration after diagnosis of SSc was 8.97 ± 8.50 years. There were no statistical differences between the 2 groups for the primary outcome measure (Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Symptoms: mean change of 0.35 in the internet group versus 0.94 in the control group; P = 0.47) and secondary outcome measures, except the EuroQol 5-domain instrument visual analog scale score (P = 0.05). Internet group participants agreed that the self-management modules were of importance to them, the information was presented clearly, and the website was easy to use and at an appropriate reading level.

Conclusion: Our RCT showed that the internet-based self-management website was not statistically superior to an educational patient-focused book in improving self-efficacy and other measures. The participants were enthusiastic about the content and presentation of the self-management website.
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http://dx.doi.org/10.1002/acr.23595DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6226368PMC
March 2019

"I'm still dad": The Impact of Scleroderma on being a Father.

Occup Ther Health Care 2018 Jan;32(1):1-13

c Private Practice Philadelphia , PA , USA.

The purpose of this study was to describe the experiences of fathers with scleroderma. Ten fathers with scleroderma were interviewed by telephone. Interviews were tape-recorded and transcribed verbatim. Two key themes emerged related to the emotional impact of the illness and the day to day realities of the illness with the unpredictability and rareness of the illness leading to ongoing feelings of isolation and fear of mortality. The negative influences of being a father with scleroderma included the inability of the fathers to participate in physical activities with their children such as outdoor sports and throwing balls. Being able to spend quality time with the child was a positive influence of the illness.
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http://dx.doi.org/10.1080/07380577.2017.1422087DOI Listing
January 2018

The evaluation of a home-based program for hands in patients with systemic sclerosis.

J Hand Ther 2019 Jul - Sep;32(3):313-321. Epub 2017 Dec 1.

Department of Orthopedics and Rheumatology, Clinical Hospital of the State University of Campinas - Unicamp, Campinas, São Paulo, Brazil. Electronic address:

Study Design: This study used a quasi-experimental design where patients were evaluated before and after participation in the self-management program.

Introduction: Hands are commonly affected in systemic sclerosis (SSc). Strategies to maintain or improve hand function are indicated upon diagnosis and throughout the course of the disease.

Purpose Of The Study: The purpose of this study was to develop and evaluate a home-based program for hands in patients with SSc.

Methods: A home-based self-management program that consisted of concise instructions about SSc and hand exercises was developed and evaluated in a group of patients with SSc during 8 weeks. Primary outcome measures were hand pain (Visual Analogue Scale) and hand function (Cochin Hand Function Scale). Secondary outcome measures were disability (Scleroderma Health Assessment Questionnaire), finger motion (delta finger-to-palm), grip strength, tip and key pinch strength, Raynaud phenomenon and digital ulcers impact, quality of life (Short Form Health Survey). For comparisons between different times analysis of variance for repeated measures was used. To calculate the effect size (ES), the Cohen's test was performed. To evaluate skin moisturizing and warming habits before and after intervention, the McNemar test was used. Statistical significance was set at P ≤ .05.

Results: Twenty-two SSc patients (19 women: 3 men; 16 limited scleroderma: 6 diffuse scleroderma) completed the program. Significant improvements were noted for hand pain (3.97 vs 2.21, ES: 0.69), Cochin Hand Function Scale (19.24 vs 12.48, ES: 0.48), Scleroderma Health Assessment Questionnaire (0.95 vs 0.48, ES: 1.01), delta finger-to-palm (92.86 vs 106.33, ES: 0.40), grip strength (14.43 vs 19, ES: 0.58), tip pinch strength (2.49 vs 4.18, ES: 1.15), key pinch strength (4.01 vs 5.22, ES: 0.76), Raynaud phenomenon impact (0.94 vs 0.47, ES: 0.75), Short Form Health Survey-role physical (47.38 vs 60.14, ES: 0.61), physical functioning (34.62 vs 61.9, ES: 0.18), social functioning (60.71 vs 75.6, ES: 0.64), bodily pain (50.55 vs 63.38, ES: 0.58), vitality (45.95 vs 62, ES: 2.22), mental health (56.62 vs 72.38, ES: 0.84) moisturizing, and cold avoidance habits. Patients considered the program easy to follow with no adverse effects related to exercises.

Discussion: We developed a home based hand care program to be offered to SSc patients. Improvements in hand function, strength, disability, motion, and overall quality of life were independent of age, income, education level, disease duration, and skin score. Our findings support those of other studies that reported the benefits of hand exercises in SSc. Some study limitations include the lack of a control group, the small number of subjects and the short-time follow up.

Conclusions: This home-based program for patients with SSc improved hand pain, function, mobility, and strength at the end of 8 weeks. Patient adherence and sustained efficacy is still to be determined.
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http://dx.doi.org/10.1016/j.jht.2017.10.013DOI Listing
January 2020

A comparison of performance on the Keitel Functional Test by persons with systemic sclerosis and rheumatoid arthritis.

Disabil Rehabil 2018 10 11;40(21):2505-2508. Epub 2017 Jun 11.

c Occupational Therapy Department , Albuquerque Public Schools , Albuquerque , NM , USA.

Purpose: The purpose of this study is to compare lower extremity impairments in persons with systemic sclerosis, rheumatoid arthritis, and healthy controls.

Methods: The participants were a convenience sample of 64 persons with systemic sclerosis, 58 persons with rheumatoid arthritis, and 30 healthy controls. The Keitel Functional Test was used to assess lower extremity joint motion and strength. Demographic information on age, disease duration, employment, and perceived overall health was also collected.

Results: Significant differences were found between the healthy control group and both the systemic sclerosis and rheumatoid arthritis groups in rising from a chair, squatting, walking 30 m, walking up and downstairs, and the total score. For hip external rotation, there were significant differences between all three groups for the right hip; for the left hip, the systemic sclerosis group had significantly less motion than the other two groups. For standing on toes, there was only a significant difference between the systemic sclerosis and the healthy control groups.

Conclusions: Persons with systemic sclerosis and rheumatoid arthritis have similar levels of lower extremity impairments but greater impairments compared to the healthy controls. These impairments may lead to decreased mobility paired with difficulties with activities of daily living such as lower extremity dressing, bathing, and feet care. Implications for Rehabilitation Persons with systemic sclerosis and rheumatoid arthritis have similar levels of lower extremity impairments but greater impairments compared to the healthy controls. Findings from this study indicate a need for rehabilitation for persons with systemic sclerosis and rheumatoid arthritis as the lower extremity impairments may lead to decreased mobility paired with difficulties with daily living activities such as lower extremity dressing, bathing, and feet care. The Keitel Functional Test could be used as a quick screening test for lower extremity impairments.
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http://dx.doi.org/10.1080/09638288.2017.1337240DOI Listing
October 2018

Workplace barriers encountered by employed persons with systemic sclerosis.

Work 2016 ;55(4):923-929

College of Health and Rehabilitation Sciences, Boston University, Boston, MA, USA.

Background: Systemic sclerosis (SSc) is an auto-immune connective tissue disease characterized by fibrosis of skin, blood vessels, and internal organs that results in significant disability.

Objective: To identify the work barriers faced by people with systemic sclerosis (SSc) in maintaining employment.

Methods: Thirty-six people with SSc who were working more than 8 hours per week completed the Work Experience Survey, which contains lists of potential work barriers, including the ability to travel to and from work; get around at work; perform essential job functions, including physical, cognitive, and task-related activities; work with others; and manage work conditions.

Results: Thirty-three participants completed and returned the questionnaires, most of whom were female, and working full time and in professional careers. Principal disease symptoms included fatigue, Raynaud's phenomenon, esophageal involvement, and leg or hand/wrist pain. All participants reported some barriers with a mean of 18 barriers per participant. At least three quarters of participants cited outside temperature (82%), cold temperatures inside the workplace (76%), and household work (76%), as barriers. The next most common barriers were using both hands (64%), arranging and taking part in social activities (64%), being able to provide self-care (61%) and working 8 hours (58%).

Conclusion: Participants reported a wide range of barriers, from cold temperatures, to physical job, fatigue related, and non-workplace demands, in maintaining the worker role. The barriers reflect the disease symptoms they reported. Identifying workplace barriers facilitates the creation of job accommodations or adaptations that will allow people with SSc to continue working.
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http://dx.doi.org/10.3233/WOR-162448DOI Listing
June 2017

Effectiveness of Occupational Therapy Interventions for Adults With Rheumatoid Arthritis: A Systematic Review.

Am J Occup Ther 2017 Jan/Feb;71(1):7101180050p1-7101180050p11

Janet L. Poole, PhD, OTR/L, FAOTA, is Professor and Program Director, Occupational Therapy Graduate Program, University of New Mexico, Albuquerque;

Objective: We reviewed the efficacy of occupational therapy-related interventions for adults with rheumatoid arthritis.

Method: We examined 51 Level I studies (19 physical activity, 32 psychoeducational) published 2000-2014 and identified from five databases. Interventions that focused solely on the upper or lower extremities were not included.

Results: Findings related to key outcomes (activities of daily living, ability, pain, fatigue, depression, self-efficacy, disease symptoms) are presented. Strong evidence supports the use of aerobic exercise, resistive exercise, and aquatic therapy. Mixed to limited evidence supports dynamic exercise, Tai Chi, and yoga. Among the psychoeducation interventions, strong evidence supports the use of patient education, self-management, cognitive-behavioral approaches, multidisciplinary approaches, and joint protection, and limited or mixed evidence supports the use of assistive technology and emotional disclosure.

Conclusion: The evidence supports interventions within the scope of occupational therapy practice for rheumatoid arthritis, but few interventions were occupation based.
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http://dx.doi.org/10.5014/ajot.2017.023176DOI Listing
June 2017

Effectiveness of Occupational Therapy Interventions for Adults With Fibromyalgia: A Systematic Review.

Am J Occup Ther 2017 Jan/Feb;71(1):7101180040p1-7101180040p10

Patricia Siegel, OTD, OTR/L, CHT, is Lecturer II, Occupational Therapy Graduate Program, University of New Mexico, Albuquerque.

Objective: This systematic review addresses the effectiveness of occupational therapy-related interventions for adults with fibromyalgia.

Method: We examined the literature published between January 2000 and June 2014. A total of 322 abstracts from five databases were reviewed. Forty-two Level I studies met the inclusion criteria. Studies were evaluated primarily with regard to the following outcomes: daily activities, pain, depressive symptoms, fatigue, and sleep.

Results: Strong evidence was found for interventions categorized for this review as cognitive-behavioral interventions; relaxation and stress management; emotional disclosure; physical activity; and multidisciplinary interventions for improving daily living, pain, depressive symptoms, and fatigue. There was limited to no evidence for self-management, and few interventions resulted in better sleep.

Conclusion: Although the evidence supports interventions within the scope of occupational therapy practice for people with fibromyalgia, few interventions were occupation based.
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http://dx.doi.org/10.5014/ajot.2017.023192DOI Listing
June 2017

Using Optimal Test Assembly Methods for Shortening Patient-Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scale-6: A Scleroderma Patient-Centered Intervention Network Cohort Study.

Arthritis Care Res (Hoboken) 2016 11 9;68(11):1704-1713. Epub 2016 Oct 9.

Lady Davis Institute for Medical Research, Jewish General Hospital, and McGill University, Montreal, Quebec, Canada.

Objective: To develop and validate a short form of the Cochin Hand Function Scale (CHFS), which measures hand disability, for use in systemic sclerosis, using objective criteria and reproducible techniques.

Methods: Responses on the 18-item CHFS were obtained from English-speaking patients enrolled in the Scleroderma Patient-Centered Intervention Network Cohort. CHFS unidimensionality was verified using confirmatory factor analysis, and an item response theory model was fit to CHFS items. Optimal test assembly (OTA) methods identified a maximally precise short form for each possible form length between 1 and 17 items. The final short form selected was the form with the least number of items that maintained statistically equivalent convergent validity, compared to the full-length CHFS, with the Health Assessment Questionnaire (HAQ) disability index (DI) and the physical function domain of the 29-item Patient-Reported Outcomes Measurement Information System (PROMIS-29).

Results: There were 601 patients included. A 6-item short form of the CHFS (CHFS-6) was selected. The CHFS-6 had a Cronbach's alpha of 0.93. Correlations of the CHFS-6 summed score with HAQ DI (r = 0.79) and PROMIS-29 physical function (r = -0.54) were statistically equivalent to the CHFS (r = 0.81 and r = -0.56). The correlation with the full CHFS was high (r = 0.98).

Conclusion: The OTA procedure generated a valid short form of the CHFS with minimal loss of information compared to the full-length form. The OTA method used was based on objective, prespecified criteria, but should be further studied for viability as a general procedure for shortening patient-reported outcome measures in health research.
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http://dx.doi.org/10.1002/acr.22893DOI Listing
November 2016

Difficulty with daily activities involving the lower extremities in people with systemic sclerosis.

Clin Rheumatol 2016 Feb 10;35(2):483-8. Epub 2015 Dec 10.

, Freedom, PA, USA.

The purpose of this study was to examine the extent of lower extremity impairments in motion and strength in people with systemic sclerosis and the relationships of the impairments to limitations in activities of daily living primarily involving the lower extremities. Participants were 69 persons with SSc who received evaluations of lower extremity joint motion (Keitel function test), strength (timed-stands test), and basic mobility (timed up and go test) and completed a demographic questionnaire regarding symptoms in the lower extremities. Activity limitations were measured by the Rheumatoid and Arthritis Outcome Score (RAOS) which examines functional ability, pain, and quality of life. The participants had difficulty with items requiring external rotation of the hips and lower extremity strength. There were moderate correlations between the impairment measures of joint motion, strength, mobility, and activity limitations. Fair correlations were found between the skin scores and the RAOS sections except for pain. The results of this study show that lower extremity involvement is present in persons with SSc. The findings, regarding strength, mobility, and joint motion are related to the ability to perform everyday activities involving the lower extremities, suggest that these areas should be targeted for intervention in persons with SSc.
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http://dx.doi.org/10.1007/s10067-015-3137-1DOI Listing
February 2016

Reliability and validity of the Manual Ability Measure-36 in persons with Charcot-Marie-Tooth disease.

J Hand Ther 2015 Oct-Dec;28(4):364-7; quiz 368. Epub 2015 Apr 30.

University of New Mexico, Occupational Therapy Graduate Program, Albuquerque, NM, USA.

Study Design: Descriptive, clinical measurement.

Introduction: Charcot-Marie-Tooth disease (CMT) is a genetic disorder that results in demyelination or axonal degeneration in peripheral nerves. Characteristic symptoms include decreased muscle strength and sensation, particularly in the hands and feet.

Purpose: Examine the reliability and validity of the Manual Ability Measure (MAM-36), a 36-item self-report questionnaire specific to hand function, in persons with CMT.

Methods: Fourteen participants with CMT completed the MAM-36 at two points one week apart. Participants were also administered performance-based tests for grip and pinch strength, dexterity, and sensation.

Results: The test-retest intraclass correlation coefficient (ICC) for the MAM-36 was 0.96. Pearson correlation coefficients showed fair to good relationships (r = 0.41-0.64) between the MAM-36 scores and most of the performance tests.

Conclusion: The MAM-36 is a reliable and valid assessment tool for measuring hand function during everyday tasks in persons with CMT.

Level Of Evidence: IIb.
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http://dx.doi.org/10.1016/j.jht.2015.04.003DOI Listing
August 2016

Activity Limitations, Participation, and Quality of Life in American Indians with and without Diabetes.

Occup Ther Health Care 2016 28;30(1):58-68. Epub 2015 May 28.

c 3 University of Iowa Hospitals and Clinics , Iowa City , IA , USA.

The objective of this study was to examine activity limitations, participation, and quality of life (QOL) in American Indians with and without diabetes. It was a cross-sectional study that included 43 participants with diabetes and 31 healthy controls. Participants received evaluations of QOL, activity and participation limitations and factors such as pain, joint motion, hand function, and depression. There were no significant differences between the two groups for past, present, or future global QOL. However, there were significant differences between the two groups for the activity and participation measures and all measures of body structure/function except for left hand strength and depression. Current health and pain, and activity limitation correlated with QOL in both groups. Joint motion and participation correlated with QOL in the group with diabetes. American Indians with diabetes had more impairments in body structure and function and limitations in activities and participation compared to American Indians without diabetes.
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http://dx.doi.org/10.3109/07380577.2015.1036193DOI Listing
October 2016

Effectiveness of Nonpharmacologic Interventions in Systemic Sclerosis: A Systematic Review.

Arthritis Care Res (Hoboken) 2015 Oct;67(10):1426-39

Sint Maartenskliniek, Nijmegen, The Netherlands.

Objective: To systematically and comprehensively document the effectiveness of nonpharmacologic interventions on physical functioning and psychological well-being in patients with systemic sclerosis (SSc).

Methods: Multiple electronic databases were searched for studies on the effectiveness of nonpharmacologic interventions in SSc. Randomized clinical trials (RCTs), controlled clinical trials (CCTs), and observational designs (ODs) with ≥10 participants were included. Two reviewers independently assessed methodologic quality using the Downs and Black checklist.

Results: Twenty-three studies (9 RCTs, 4 CCTs, and 10 ODs) were included. Studies assessing comparable interventions were grouped, resulting in data for 16 different interventions. The total number of patients included per study ranged from 10 to 53. Seventeen different outcome domains were assessed, with hand function, limitations in activities, and quality of life being assessed most frequently. Three studies, all RCTs, were rated as high quality. These RCTs reported that 1) a multifaceted oral health intervention improves mouth hygiene, and additional orofacial exercises did not improve mouth opening, 2) a multidisciplinary team-care program improves limitations in activities, mouth opening, and hand grip strength, and 3) manual lymph drainage improves hand function, limitations in activities, and quality of life.

Conclusion: The body of knowledge regarding nonpharmacologic care in SSc is very limited due to the wide variety in studied interventions and outcomes in the relatively uncommon but highly disabling disease. To structure and focus future research, an international consensus should be established to prioritize primary targets for nonpharmacologic treatment and the content of interventions and to agree on a core set of outcome measures.
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http://dx.doi.org/10.1002/acr.22595DOI Listing
October 2015

Participation in life situations by persons with systemic sclerosis.

Disabil Rehabil 2015 23;37(10):842-5. Epub 2014 Jul 23.

Occupational Therapy Graduate Program, School of Medicine, University of New Mexico , Albuquerque, NM , USA .

Purpose: To measure the frequency of participation in life situations.

Methods: A sample of 83 persons with systemic sclerosis (SSc) completed questionnaires regarding the presence and severity of disease symptoms, disability [the Health Assessment Questionnaire (HAQ)], depression [the Center for Epidemiologic Studies Depression Scale (CES-D)], and participation [the Adelaide Activities Profile (AAP)]. On the AAP, individuals rate the frequency of participation in four domains: domestic chores, household maintenance, service to others and social activities.

Results: Participants were predominantly female, married, educated, white, and had diffuse SSc. Mean age was 53.7 years and mean disease duration was 9.9 years. On the AAP, participation was significantly more frequent for domestic chores than for household maintenance, service to others, and social activities. More fatigue (p < 0.05), disability (p < 0.001), and fatigue (p < 0.05) resulted in lower total AAP scores. More fatigue, pain, severe gastrointestinal symptoms, and depression related to lower household maintenance scores, while the presence of ulcers and more disability and depression were associated with lower domestic chores scores.

Conclusions: Participation in life situations in persons with SSc is related to higher disability, depression, and severity of disease symptoms. Interventions to address the disability, depression and symptoms may increase participation.
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http://dx.doi.org/10.3109/09638288.2014.944624DOI Listing
December 2015

Mothers with chronic disease: a comparison of parenting in mothers with systemic sclerosis and systemic lupus erythematosus.

OTJR (Thorofare N J) 2014 ;34(1):12-9

This study compared parenting ability in mothers with systemic sclerosis (SSc) and systemic lupus erythematosus (SLE), two chronic, autoimmune, connective tissue diseases that primarily affect women. Seventy-four mothers with SSc and 68 mothers with SLE completed self-report questionnaires on demographic characteristics, pain, fatigue, occupational performance, and parenting. Results showed that mothers with SSc were slightly older, were more educated, and had decreased occupational performance. Mothers with SLE had more pain and fatigue. There were no significant differences between mothers with SSc and SLE who had children 5 years of age and younger. However, there were significant differences between the mothers with SSc and SLE who had children aged 6 to 18 years on four items on the Parenting Disability Index: playing games with child, getting up with child during the night, keeping child out of unsafe situations, and helping child solve personal/social problems. These differences may be due to differences in the levels of pain, fatigue, and occupational performance, possibly stemming from differences in disease manifestations.
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http://dx.doi.org/10.3928/15394492-20131029-06DOI Listing
April 2014

Evidence-based management of hand and mouth disability in a woman living with diffuse systemic sclerosis (scleroderma).

Physiother Can 2013 ;65(4):317-20

School of Rehabilitation Science, McMaster University, Hamilton, Ont.

This paper uses a case study to highlight the evidence for rehabilitation interventions designed to reduce disability of the hand and mouth and manage fatigue in persons with diffuse systemic sclerosis to inform clinical practice and guide future research.
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http://dx.doi.org/10.3138/ptc.2012-40DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3817882PMC
January 2014

Taking charge of systemic sclerosis: a pilot study to assess the effectiveness of an internet self-management program.

Arthritis Care Res (Hoboken) 2014 May;66(5):778-82

Objective: To assess the effects of an internet self-management program for systemic sclerosis on self-efficacy, health efficacy, and management of care, pain, fatigue, functional ability, and depression.

Methods: Participants logged on to a password-protected web site and completed modules and learning activities at their own pace over 10 weeks. Participants were encouraged to log on to the discussion board, participate in an interactive component of the web site, and respond to questions posted for each module. Participants completed pre- and postintervention questionnaires on perceived self-efficacy, health efficacy, ability to manage care, functional disability,depression, pain, and fatigue. They also completed an 8-question evaluation form regarding satisfaction with the web site, program content, discussion boards, and learning activities.

Results: Sixteen participants completed the study and postintervention measures. There were significant improvements in mean scores for ability to manage care (effect size [ES] 0.62, P = 0.025) and health efficacy (ES 0.72, P = 0.012), and significant decreases in fatigue (ES 0.55, P = 0.045) and depression (ES 0.71, P = 0.013). Self-efficacy improved, but not significantly. The evaluation of the program revealed mean scores ranging from 4.2 (web site was visually appealing) to 4.9 (information presented clearly) on a 5-point scale, where 5 is most satisfied.

Conclusion: These findings from this pilot study suggest that a self-management program delivered using an internet format can lead to statistically significant changes in health efficacy and management of care, fatigue, and depression. These results need to be confirmed with a larger randomized controlled trial with a longer followup period.
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http://dx.doi.org/10.1002/acr.22192DOI Listing
May 2014

The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.

BMJ Open 2013 Aug 7;3(8). Epub 2013 Aug 7.

Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.

Introduction: Psychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.

Methods And Analysis: SPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.

Ethics And Dissemination: The use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.
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http://dx.doi.org/10.1136/bmjopen-2013-003563DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740254PMC
August 2013

Evaluation of a mail-delivered, print-format, self-management program for persons with systemic sclerosis.

Clin Rheumatol 2013 Sep 9;32(9):1393-8. Epub 2013 May 9.

School of Medicine, University of New Mexico, MSC09 5240, Albuquerque, NM 87131-0001, USA.

Patient self-management programs usually require participants to attend group sessions, which can be difficult for individuals with mobility issues. In addition, many programs are not disease specific. The purpose of this study was to evaluate the effects of a mail-delivered self-management program for individuals with scleroderma (SSc). The program consisted of a workbook and exercise DVD that provided information on medical aspects of the disease, dysphagia, fatigue management, advocacy, activities of daily living, oral hygiene, skin and wound care, psychosocial changes, exercises, and other features of the condition. Participants provided feedback on the effects of the self-management program by responding to questions on demographic and six self-report questionnaires, keeping a health log, and participating in a program evaluation interview. A total of 49 participants completed the program and returned the postintervention questionnaires. Participants consistently reported that the program was easy to use. Depression, fatigue, and pain decreased, and hand function, self-efficacy for controlling pain, and self-efficacy "other" improved; however, the only statistically significant change was in self-efficacy for pain. This is the first study to develop and assess the effects of a mail-delivered format for self-management for people with SSc. A self-management program should help individuals with SSc develop self-management strategies to manage this complex disease and advocate for themselves to promote better health.
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http://dx.doi.org/10.1007/s10067-013-2282-7DOI Listing
September 2013

Hand impairment and activity limitations in four chronic diseases.

J Hand Ther 2013 Jul-Sep;26(3):232-6; quiz 237. Epub 2013 Apr 24.

Occupational Therapy Graduate Program MSC09 5240, University of New Mexico, Albuquerque, NM 87131-0001, USA.

Study Design: Retrospective cohort.

Introduction: Hand involvement in osteoarthritis (OA) and rheumatoid arthritis (RA) are well known to occupational and physical therapists; however, it is not known whether the impairments and activity limitations with diabetes (DMII) and systemic sclerosis (SSc) are as severe as those observed with OA and RA.

Purpose: To compare the hand impairments and activity limitations in the 4 diseases.

Methods: A convenience sample of 156 participants received evaluations of hand impairments: strength, joint motion, and dexterity and completed a hand activity limitations questionnaire.

Results: The SSc and RA participants had weaker pinch, decreased joint motion and more activity limitations than the DMII and OA groups. There were no significant differences between the groups for right hand grip strength and pegboard dexterity, and applied dexterity.

Conclusions: OA and DMII groups had significantly less impairments and activity limitations than the SSc and RA groups.

Level Of Evidence: 2C.
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http://dx.doi.org/10.1016/j.jht.2013.03.002DOI Listing
March 2014

Experiencing work as a daily challenge: the case of scleroderma.

Work 2013 ;44(4):405-13

College of Nursing, University of New Mexico, Albuquerque, NM 87131-5688, USA.

Objective: Little is known about the physical and discretionary aspects of work that people with scleroderma (SSc) find difficult. This article describes the findings from a study that explored the challenges and adaptations made by individuals with SSc to continue to work.

Participants: Thirty-two employed individuals with SSc participated. Participants were predominantly women (82%), white (79%), and well educated (M = 16.9 years). The average age was 47.3 years, and 60.6% were married. Mean disease duration was 9.7 years, and 56.2% had diffuse SSc. Mean years on the job was 10.2 (SD ± 8.8), and 71.9% worked at least 35 hours per week.

Methods: Participants engaged in a single structured interview about work-related challenges and adaptations. Content and thematic analysis was used to identify key themes across the interviews.

Results: Employees with SSc experienced Work as a daily challenge. This central theme described the general work experience for most participants. Three subthemes described their specific experiences: The work environment: Opportunities, challenges, and accommodations; Career planning; and Supportive others.

Conclusions: The participants were anxious to find scenarios that allowed them to continue to work. Worksite accommodations and flexibility in scheduling can make the difference between working and disability.
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http://dx.doi.org/10.3233/WOR-2012-1420DOI Listing
November 2014

Physical and occupational therapy referral and use among systemic sclerosis patients with impaired hand function: results from a Canadian national survey.

Clin Exp Rheumatol 2012 Jul-Aug;30(4):574-7. Epub 2012 Aug 29.

Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.

Objectives: Contractures and deformities of the hand are major factors in disability and reduced health-related quality of life in systemic sclerosis (SSc). Physical (PT) and occupational therapy (OT) have been emphasised to address impaired hand function, but little is known about the extent they are employed. The objective of this study was to determine the proportion of Canadian SSc patients with hand involvement who are referred to and use PT or OT services and factors associated with referral.

Methods: Participants were respondents to the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities who rated ≥1 of 5 hand problems (hand stiffness, difficulty making fist, difficulty holding objects, difficulty opening hand, difficulty with faucet) as occurring at least sometimes with moderate or higher impact. Patients indicated if their physicians recommended PT or OT and if they used these services. Multivariate logistic regression assessed independent predictors of PT or OT referral.

Results: Of 317 patients with hand involvement, 90 (28%) reported PT or OT referral, but only 39 (12%) reported using these services. PT or OT referral was associated with more hand problems (odds ratio [OR]=1.24, 95% confidence interval [CI] 1.02-1.51, p=0.031) younger age (OR=0.96, 95% CI 0.94-0.99, p=0.004) and not being employed (OR=0.50, 95% CI 0.26-0.97, p=.0041).

Conclusions: Few SSc patients with hand involvement are referred to PT or OT, and even fewer use these services. High-quality randomised controlled trials of PT and OT interventions to improve hand function in SSc are needed.
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November 2012
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