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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.

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.

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., (Copyright © 2013 Hanley & Belfus. Published by Elsevier Inc. All rights reserved.)

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.

Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc.

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., (Copyright © 2011 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Unlabelled: Poole JL, Sadek J, Haaland KY. Ipsilateral deficits in 1-handed shoe tying after left or right hemisphere stroke., Objective: To examine 1-handed shoe tying performance and whether cognitive deficits more associated with left or right hemisphere damage differentially affect it after unilateral stroke., Design: Observational cohort comparing ipsilesional shoe tying, spatial and language skills, and limb praxis., Setting: Primary care Veterans Affairs and private medical center., Interventions: Not applicable., Participants: Volunteer right-handed sample of adults with left or right hemisphere damage and healthy demographically matched adults., Main Outcome Measure: The number of correct trials and the total time to complete 10 trials tying a shoe using the 1-handed method., Results: Both stroke groups had fewer correct trials and were significantly slower tying the shoe than the control group. Spatial skills predicted accuracy and speed after right hemisphere damage. After left hemisphere damage, accuracy was predicted by spatial skills and limb praxis, while speed was predicted by limb praxis only., Conclusions: Ipsilesional shoe tying is similarly impaired after left or right hemisphere damage, but for different reasons. Spatial deficits had a greater influence after right hemisphere damage, and limb apraxia had a greater influence after left hemisphere damage. Language deficits did not affect performance, indicating that aphasia does not preclude using this therapy approach. These results suggest that rehabilitation professionals should consider assessment of limb apraxia and ipsilesional skill training in the performance of everyday tasks.

The purpose of this study was to investigate whether the use of paraffin and active hand exercises would improve activity and participation in persons with scleroderma. In this series of three single case studies, participants used paraffin and performed active hand exercises daily for eight weeks. To assess hand function, measures of body function/structure and activity/participation were taken at baseline, at one month and at two months after intervention. All participants experienced clinically significant improvements in both body function/structure measurements of hand function and in their ability to participate in activities. Significant improvements were found more frequently on body function/structure measures than activity/participation measures. This preliminary study lends support in favor of using paraffin and hand exercises as a treatment to improve hand function related to participation in daily activities in persons with scleroderma. Further research with a larger sample and increased variable control is needed.