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Invited Clinical Commentary BACKGROUND: Arthritis is one of the most frequently reported causes of disability in the United States and the prevalence is expected to increase in the coming decades. While many rheumatic diseases involve hand impairments, most are systemic and involve more than the musculoskeletal system. Functional and work disability are high and people would benefit from the services of occupational and physical therapists.This paper reviews concepts of self-management, and symptoms that contribute to limitations and restrictions to participation in daily life in people with rheumatic diseases and suggests roles for hand therapists beyond the immediate hand impairments.The impact of selected rheumatic diseases on functional and work disability are reviewed along with strategies for symptom management and self-management. Upper extremity impairments of selected rheumatic diseases are also discussed.The role for hand therapists in evaluating and addressing the complex needs of persons with rheumatic diseases, including less common diseases, is discussed. Outcome measures for fatigue, muscle involvement, ergonomics and computer use, and work disability are introduced. Finally, strategies for self-management and prevention of work and functional disability, along with symptom management for fatigue and pain are presented.Hand therapists can play a vital role in chronic rheumatic disease management to improve self-management and increase participation in meaningful activities. Patients, primary care and rheumatology providers need to be educated about the scope of services occupational and physical therapists provide beyond the hand impairments.

Many indigenous non-Caucasian populations, including Native Americans, have been reported to have higher rates, distinct clinical phenotypes, increased complications, and greater severity of systemic sclerosis (SSc). However, little is known of SSc specifically in Native Americans of the American Southwest. This study compared the clinical and serologic manifestations and outcomes of SSc in Native Americans and non-Native Americans (non-Natives) of this region.This cross-sectional retrospective study included 137 SSc patients (109 [80%] were non-Native and 28 [20%] were Native Americans) followed over a mean of 11.5 ± 7.6 years. Participants were repetitively evaluated with medical history, physical examination, echocardiography, chest imaging, and serologic testing. Disease characteristics and outcomes were statistically compared between Native Americans and non-Native patients.The estimated prevalence of SSc in Native Americans was 40.0 cases/100 000 vs 17.1 cases/100 000 for non-Natives (odds ratio 2.34, 95% confidence interval [CI] 1.55-3.55, P .001). The cohorts were similar in terms age, age of onset, limited vs diffuse cutaneous SSc, telangiectasias, gastroesophageal reflux disease, Raynaud phenomenon, serologies, interstitial lung disease, pulmonary arterial hypertension, scleroderma renal crisis, cancer prevalence, and overall mortality (all P .05). However, for Native Americans, mortality specifically from fatal infections was 3.94-fold that of non-Natives (hazard ratio 6.88, 95% CI 1.37-34.64; P .001).In Native Americans of the American Southwest, SSc is increased in prevalence but is phenotypically similar to SSc in non-Natives. However, mortality due specifically to infection is increased in Native Americans with SSc.

Objective: Certain Hispanic/Latino (Hispanic) populations have been reported to have higher rates and severity of systemic sclerosis; however, little is known of systemic sclerosis in the American Southwest. This study compared manifestations of systemic sclerosis in Hispanics with non-Hispanics of New Mexico. Methods: This cross-sectional longitudinal study included 109 systemic sclerosis patients followed over a mean of 12.6 ± 8.9 years. Subjects were repetitively evaluated including physical examination, echocardiography, chest imaging, and serologic testing and observed for complications. Disease characteristics and long-term outcomes were statistically compared between self-identified Hispanic and non-Hispanic subjects. Results: A total of 73 (67%) systemic sclerosis subjects were Hispanic and 36 (33%) were non-Hispanic. The cohorts were similar in mean age, age of systemic sclerosis onset, limited versus diffuse cutaneous systemic sclerosis, telangiectases, gastroesophageal reflux disease, Raynaud’s phenomenon, autoantibody profile, interstitial lung disease, pulmonary hypertension, scleroderma renal crisis, mortality, and comorbid malignancy (all p > 0.05). However, the standardized mortality ratio was increased in both cohorts relative to age-adjusted mortality: Hispanic: 2.08, confidence interval (1.94–2.24); non-Hispanic: 1.56, confidence interval (1.46–1.68). Furthermore, the standardized incidence ratio for malignancy was increased in both cohorts: Hispanic: 1.45, confidence interval (1.35–1.56); non-Hispanic: 1.24, confidence interval (1.16–1.34). The mean age of cancer diagnosis occurred at a significantly younger age in Hispanics (Hispanics: 53.1 ± 9.7 years; non-Hispanics 63.7 ± 7.9 years; 95% confidence interval: −19 ⩽ 10.6 ⩽ 2.2; p = 0.016). Conclusion: Systemic sclerosis phenotype, autoantibodies, complications, outcomes, malignancy rates, and mortality are generally similar between Hispanics and non-Hispanics with systemic sclerosis in the American Southwest. However, age-adjusted comorbid malignancy and mortality rates are significantly increased in both groups.

Objective: The aim of this study is to examine validity, reliability, and responsiveness to change of Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Chronic Conditions in persons with systemic sclerosis. Methods: We conducted a post hoc analysis of the Patient-Reported Outcomes Measurement Information System Self-Efficacy measure and other quality-of-life measures from systemic sclerosis participants from a 16-week randomized control trial. The trial compared an Internet-based self-management program to a control condition where participants were provided an educational book. All participants completed outcome measures at baseline and following the 16-week trial period. Results: The mean age of participants was 53.7 years, 91% were female and systemic sclerosis subtype included 44.9% limited/sine and 43.1% diffuse; mean disease duration was 9.0 years. All self-efficacy subscales (Managing Emotions, Symptoms, Daily Activities, Social Interactions, and Medications/Treatment) demonstrated good internal consistency (.92–.96). All subscales showed statistically significant correlations with other validated measures of depressive symptoms and quality of life (.20–.86) but were not associated with satisfaction nor with appearance. The subscales appropriately discriminated between those with and without depressive symptoms and demonstrated responsiveness to change over the 16-week period for those who had a corresponding increase in reported quality of life. Conclusion: The Patient-Reported Outcomes Measurement Information System Self-Efficacy measure is valid, reliable, and responsive to change for persons with systemic sclerosis.

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.

Systemic sclerosis (SSc) is a rare orphan disease, characterized by skin thickening, vascular insufficiency, and fibrosis of internal organs. SSc affects about 100,000 people in the United States. This study explored perceived benefits and challenges of patient partners and stakeholders, who were team members on a project to revise and test a self-management program (Taking Charge of Systemic Sclerosis). Five patient partners, 1 stakeholder from the Scleroderma Foundation and 1 stakeholder from a state chapter of the Scleroderma Foundation were interviewed. Conversations were audio recorded and transcribed verbatim and analyzed. Four themes emerged from the analysis with corresponding subthemes: contributions to study, benefits of involvement, challenges, and project leadership. The themes and subthemes were generally similar to those expressed in other studies. However, additional benefits from engagement were identified: acceptance, increased knowledge of SSc, and helping others. Participants reported feeling supported and valued as members of the team and that their opinions mattered which is in contrast with findings from other studies.

To identify the importance of and difficulty with valued activities in persons with systemic sclerosis (SSc) and to examine relationships between disease symptoms and difficulty with valued activities using the Valued Activities Scale (VLA). A secondary purpose was to examine the internal consistency of the Short-VLA Scale (S-VLA). A cross-sectional convenience sample of 99 people with SSc completed questionnaires regarding demographics, symptom severity, Health Assessment Questionnaire (HAQ), Center for Epidemiologic Studies Depression Scale (CES-D), and the VLA. Obligatory activities were rated as most important; committed activities were significantly more difficult than obligatory and discretionary. Less fatigue (p < 0.01) and lower HAQ (p < 0.001) and CES-D (p < 0.01) scores were associated with higher total VLA scores. Internal consistency of the S-VLA was excellent (Cronbach’s alpha = 0.92; p < 0.0001). The correlation between the S-VLA and the VLA was excellent (r = 0.96; p < 0.001). There were moderate correlations between the S-VLA and the HAQ (r = 0.73; p < 0.0001); the correlation with the CES-D was only fair (r = 0.35; p < 0.001). Committed and discretionary activities were more difficult for people with SSc to perform. Results are similar to findings with people with rheumatoid arthritis and systemic lupus erythematosus.IMPLICATIONS FOR REHABILITATIONHome management/caregiving (committed) and leisure and social participation (discretionary) activities are more difficult to perform by people with SSc compared to self-care (obligatory) activities.Our findings that difficulty scores on the VLA were associated with more fatigue and depression suggest the need for rehabilitation to reduce disability in people with SSc.The S-VLA may be a useful screening and monitoring tool for SSc and other chronic conditions. Home management/caregiving (committed) and leisure and social participation (discretionary) activities are more difficult to perform by people with SSc compared to self-care (obligatory) activities. Our findings that difficulty scores on the VLA were associated with more fatigue and depression suggest the need for rehabilitation to reduce disability in people with SSc. The S-VLA may be a useful screening and monitoring tool for SSc and other chronic conditions.

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.

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.

International audience; 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.

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.

Contains fulltext : 238184.pdf (Publisher’s version ) (Closed access) Systemic sclerosis (SSc), the most lethal of rheumatologic conditions, is the cause of death in >50% of SSc cases, led by pulmonary fibrosis followed by pulmonary hypertension and then scleroderma renal crisis (SRC). Multiple other preventable and treatable SSc-related vascular, cardiac, gastrointestinal, nutritional and musculoskeletal complications can lead to disability and death. Vascular injury with subsequent inflammation transforming to irreversible fibrosis and permanent damage characterizes SSc. Organ involvement is often present early in the disease course of SSc, but requires careful history-taking and vigilance in screening to detect. Inflammation is potentially reversible provided that treatment intensity quells inflammation and other immune mechanisms. In any SSc phenotype, opportunities for early treatment are prone to be under-utilized, especially in slowly progressive phenotypes that, in contrast to severe progressive ILD, indolently accrue irreversible organ damage resulting in later-stage life-limiting complications such as pulmonary hypertension, cardiac involvement, and malnutrition. A single SSc patient visit often requires much more physician and staff time, organization, vigilance, and direct management for multiple organ systems compared to other rheumatic or pulmonary diseases. Efficiency and efficacy of comprehensive SSc care enlists trending of symptoms and bio-data. Financial sustainability of SSc care benefits from understanding insurance reimbursement and health system allocation policies for complex patients. Sharing care between recognised SSc centers and local cardiology/pulmonary/rheumatology/gastroenterology colleagues may prevent complications and poor outcomes, while providing support to local specialists. As scleroderma specialists, we offer a practical framework with tools to facilitate an optimal, comprehensive and sustainable approach to SSc care. Improved health outcomes in SSc relies upon recogntion, management and, to the extent possible, prevention of SSc and treatment-related complications.

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. 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.

ObjectiveNon-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.MethodsA 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.ResultsOf 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.ConclusionThere 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.

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

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.

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.

Background: Autoimmune Connective Tissue Disorders (CTDs), including Mixed Connective Tissue Disease (MCTD), systemic sclerosis (SSc) and systemic lupus erythematous (SLE) can lead to Raynaud phenomenon, involvement of internal organs, pain in joints, skin abnormalities and muscle weakness. Consequently, people with CTDs experience limitations in activities of daily life and restrictions in participation. Programmes promoting patient education, self-management, physical activity, and healthy life style, provided by health professionals are therefore essential to these patients. However, there is a substantial gap of knowledge about the content which should be included in non-pharmacological intervention programmes. Objectives: To identify, map and appraise the content of existent face-to-face, digital and/or distance-learning non-pharmacological intervention programmes for patients with MCTD, SSc and/or SLE to inform a EULAR funded project with the overall aim to develop a new distance learning programme realizable with digital technologies. Methods: A scoping literature review with a nested descriptive meta-analysis was performed in MEDLINE [Pubmed], EMBASE [OVID], CINAHL [EBSCO], PsycINFO [ProQUEST], the Cochrane Database of Systematic Reviews, OTSeeker, PEDro, and SciELO in September 2018. Furthermore, an international task-force identified additional grey literature and ongoing research projects. Eligibility checks of the articles based on pre-defined in- and exclusion criteria and data extractions were done independently by two researchers. The interventions contained in these programmes were 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 illustrate the relationships between the interventions and other characteristics of the studies. The protocol was pre-published on ResearchGate. Results: Of 6667 identified records, 94 papers were eligible. Sixty-one studies (65%) were conducted between 2000 and 2018, mainly in the USA (35 [37%]), Brazil (11 [12%]) and Italy (10 [11%]). Thirty-three studies (35%) were randomised controlled trials, 17 (18%) were one-group pre-post-test designs and 12 (16%) clinical trials without randomisation (Figure 1). Overall, 4274 patients participated; 2955 had SLE [69%] and 1319 had SSc [31%], thus no studies with MCTD where found. The main content of the intervention programmes included exercises (22 [23%]), self-management (9 [10%]) and education (7 [7%]), with treatment goals focusing mainly on physical function (27 [29%]), quality of life (19 [20%]) and fatigue (12 [16%]). The interventions (67 [72%]) included or were based on an initial face-to-face component. Conclusion: There was a variety of programmes content and interventions due to different consequences regarding activity limitations and participation restrictions in autoimmune CTDs. This highlights the need for personalized, multicomponent, non-pharmacological interventions. Disclosure of Interests: Valentin Ritschl: None declared, Ricardo Ferreira: None declared, Ruben Fernandes: None declared, Eduardo Santos: None declared, Kim Fligelstone: None declared, Helena Gaspar: None declared, Linda Schraven: None declared, Judy Ammerlaan: None declared, Georg Stummvoll: None declared, Maria Joao Salvador: None declared, Janet L Poole: None declared, Cornelia van den Ende: None declared, Carina Bostrom: None declared, Tanja Stamm Grant/research support from: TS has received grant support from AbbVie., Paid instructor for: TS has received speaker fees from AbbVie, Janssen, MSD, Novartis, and Roche.

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.

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.

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.

Date Presented 03/27/20 In the emerging field of telerehab, OTs can provide rehabilitation in novel ways, such as by using apps or other technologies. Adherence to home exercise is a critical part of sustaining therapeutic gains, but often home exercise is not completed and function may decline after discharge. We show how an app was used to track home exercises, as well as facilitators of and barriers to use. Such information will be important for practitioners when considering using apps and other technologies. Primary Author and Speaker: Susan Murphy Additional Authors and Speakers: Donnamarie Krause Contributing Authors: Erin Welsh, Angela Lyden, Mary Barber, Maya Sabbagh, Vivek Nagaraja, Erica Bush, Janet Poole, Dinesh Khanna

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.

The objective of this study was to compare quality of life (QoL) and factors which relate to QoL in non-Hispanic white adults with and without type II diabetes (DM). This cross sectional study included thirty-eight participants: 19 adults aged 18 - 75 with type II diabetes and 19 healthy control adults without diabetes. Socio-demographic information was collected on age, ethnicity, marital status, education level, employment, and current health. Participants completed self-report questionnaires on activity limitations, community integration, emotional/social function, and global and specific quality of life. Performance-based tests were administered to measure grip and pinch strength, dexterity, and upper and lower extremity joint motion. t -tests were done to compare the participants with and without DM on the demographic variables, self-report questionnaires and performance based tests. Spearman rho correlation coefficients were done to determine relationships between QoL and other variables. The DM group had significantly lower levels of current health than the HC group, but there were no significant differences between other demographic variables. The DM group had significantly lower present and past QoL and specific QoL than healthy controls. The DM group also had more pain and joint limitations, decreased dexterity, poorer emotional/social function, more activity limitations and less community integration than healthy controls. In the DM group, age, pain, joint motion, emotional/social, functional disability, and community integration correlated with specific QoL. In contrast, in the HC group, pain, emotional/social, health and functional disability correlated with the specific QoL.

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.

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.

This session will discuss patient and stakeholder involvement as members of the research team on a grant funded by the Patient Centered Outcomes Research Institute (PCORI). Patients with a rare chronic disease, systemic sclerosis, and members from key stakeholder organizations were involved in evaluating, revising and testing the effectiveness of an internet self-management program. They participated at several levels of engagement including planning the study, conducting the study, and disseminating the results. This session will discuss how engagement occurred at each of these levels through different opportunities such as creating interventions, identifying outcomes, recruiting, presenting findings, and planning dissemination efforts. The benefits and challenges for both researchers and patient research partners will also be described. Disclosure of Interest None declared

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.

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.

Systemic sclerosis (SSc) is a connective-tissue disease that causes significant disability, handicap, and worsening of quality of life (Poole JL, Steen VD. The use of the health assessment questionnaire (HAQ) to determine physical disability in systemic sclerosis. Arthritis Care Res. 1991;4(1):27–31; Rannou F, Poiraudeau S, Berezne A, Baubet T, Le-Guern V, Cabane J, et al. Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin hand function scale, health assessment questionnaire (HAQ), systemic sclerosis HAQ, and MOS SF-36. Arthritis Rheum. 2007;57(1):94–102 [Epub ahead of print]; Hudson M, Thombs BD, Steele R, Watterson R, Taillefer S, Baron M. Clinical correlates of quality of life in systemic sclerosis measured with the world health organization disability assessment schedule II. Arthritis Rheum. 2008;59(2):279–84). Management of the person with SSc requires a multidisciplinary approach including rehabilitation techniques (Table 52.1) such as occupational and physical therapy. To determine the effectiveness of rehabilitation techniques, reliability, and valid outcome measures are needed. This chapter will review assessments available to measure disability (Table 52.2) and participation in persons with SSc and discuss rehabilitation techniques that have been shown to be effective in improving joint motion, hand function, strength, general conditioning, and participation in daily life.

Date Presented 04/05/19 This presentation reports on a qualitative study that explored the impact of fatigue on the occupational engagement of young adults with rheumatic conditions. Young adult participants reported limited success in reducing fatigue, which often interfered with their ability to balance career, home life, and social participation. Results of this study will inform the development of an occupation-based fatigue management intervention tailored to young adults’ age-specific needs. Primary Author and Speaker: Kristine Carandang Additional Authors and Speakers: Janet Poole

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.

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.Dans ce document, on utilise une étude de cas pour présenter les données probantes à l'appui d'interventions de réadaptation conçues pour atténuer l'incapacité de la main et de la bouche et gérer la fatigue chez les personnes atteintes de sclérodermie systémique diffuse afin d'éclairer la pratique clinique et de guider des recherches futures.

Date Presented 4/20/2018 Scleroderma is a rare chronic disease. No educational programs exist for people with this disease. This randomized controlled trial evaluated the effectiveness of an Internet self-management program for scleroderma. Primary Author and Speaker: Janet Poole Contributing Authors: Veronica Berrocal, Jennifer Serrano, Erica Bush, Sharon Newbill, Josephine Battyany, Cynthia Maxwell, Mary Alore, Laura Dyas, Saville Kellner, Luke Evnin, Dennis Raisch, Richard Silver, Pedro Cuencas, Dinesh Khanna

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.

Item does not contain fulltext Body concealment is an important component of appearance distress for individuals with disfiguring conditions, including scleroderma. The objective was to replicate the validation study of the Body Concealment Scale for Scleroderma (BCSS) among 897 scleroderma patients. The factor structure of the BCSS was evaluated using confirmatory factor analysis and the Multiple-Indicator Multiple-Cause model examined differential item functioning of SWAP items for sex and age. Internal consistency reliability was assessed via Cronbach's alpha. Construct validity was assessed by comparing the BCSS with a measure of body image distress and measures of mental health and pain intensity. Results replicated the original validation study, where a bifactor model provided the best fit. The BCSS demonstrated strong internal consistency reliability and construct validity. Findings further support the BCSS as a valid measure of body concealment in scleroderma and provide new evidence that scores can be compared and combined across sexes and ages. 8 p.

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.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).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).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.

OBJECTIVE. We identified the extent of the need for interventions and assistive technology to prevent computer use problems in people with systemic sclerosis (SSc) and the accommodation strategies they use to alleviate such problems. METHOD. Respondents were recruited through the Scleroderma Foundation. Twenty-seven people with SSc who used a computer and reported difficulty in working completed the Computer Problems Survey. RESULTS. All but 1 of the respondents reported one problem with at least one equipment type. The highest number of respondents reported problems with keyboards (88%) and chairs (85%). More than half reported discomfort in the past month associated with the chair, keyboard, and mouse. Respondents used a variety of accommodation strategies. CONCLUSION. Many respondents experienced problems and discomfort related to computer use. The characteristic symptoms of SSc may contribute to these problems. Occupational therapy interventions for computer use problems in clients with SSc need to be tested.

This study investigates parenting and the impact of symptoms, such as pain and fatigue, on the parenting abilities of mothers with systemic lupus erythematosus (SLE). Participants were 68 mothers with SLE who had children 18 years of age and younger. The mothers completed surveys consisting of a demographic questionnaire and self-report instruments such as the Parenting Disability Index (PDI), Health Assessment Questionnaire, Pain Visual Analog Scale, and Multidimensional Assessment of Fatigue Scale. Analysis of variance was used to compare parenting abilities for women with younger children (birth -5 years) and women with older children (6-18 years) and women with children in both age groups. There were no significant differences between the three groups. However, having more fatigue, functional disability, and less education resulted in higher PDI scores in all groups. Mothers with children younger than age 5 reported that having energy to talk/listen to a child was the most difficult parenting task. Mothers with children between 6 and 18 years of age reported the most difficulties with maintaining discipline, playing games, shopping, and doing household chores. Symptoms of lupus have a significant influence on mothering roles. In daily practice, health care providers may want to consider inquiring about the impact SLE may be having on their patients' parenting roles.

Purpose. The purpose of this pilot study was to compare two occupational therapy regimens following arthroplasty: thumb splint plus home program and thumb splint plus occupational therapy. Methods. Nine participants who underwent a ligament reconstruction and tendon interposition surgery of the carpometacarpal (CMC) joint of the thumb were randomly assigned to either receive a splint and occupational therapy intervention or receive a splint and a home exercise program. Participants were assessed preoperatively and 6 months postoperatively using standardized assessments of joint motion, hand function, strength, and self-reports of pain and functional ability. Results. In each group, participants improved on all measures after surgery but there were no significant differences between the groups. Conclusion. The results suggest that either occupational therapy regimen postsurgery is effective but because of the small sample size, the results should be interpreted with caution.

Poole JL, Sadek J, Haaland KY. Meal preparation abilities after left or right hemisphere stroke. Objective To examine meal preparation ability after right or left hemisphere damage (RHD, LHD) caused by stroke and whether cognitive (spatial abilities, aphasia, limb apraxia) and motor deficits are differentially associated with meal preparation. Design Observational cohort design. Setting Primary care Veterans Affair Medical Center and private medical center. Participants Volunteer right-handed sample of adults with LHD (n=30) or RHD (n=16) caused by stroke and healthy demographically matched adults (n=63) (N=109). Interventions Not applicable. Main Outcome Measures Total completion time, number and type of errors, and level of independence for a meal preparation task consisting of making a hot beverage and toast, eating part of the meal, and clean-up. Results Both stroke groups took significantly more time to complete the meal preparation task than the control group. Total errors and level of independence were worse in the group with LHD than other groups, but individual errors did not significantly differ between the 2 stroke groups. While correlations should be interpreted cautiously, especially in the relatively small RHD group, poorer ipsilesional motor performance was associated with longer completion time in the RHD group, and poorer contralesional motor performance and greater aphasia were associated with less independence in the LHD group. Conclusions These findings demonstrate impaired meal preparation after LHD or RHD but greater impairment after LHD. Poorer meal preparation is associated with different cognitive and motor deficits in the 2 stroke groups.