Abstract

Abstract Background Clinical outcome measures for hand function in systemic sclerosis (SSc) can be assessed using validated questionnaires such as the Cochin hand function questionnaire (CHFS). The CHFS can evaluate the physical efficacy of hand physiotherapy. However, there is currently no validated questionnaire for assessing patient motivation to engage in hand exercises, which is a crucial consideration for any exercise regime. The aim of this study was to evaluate patient opinions of their own hand function status and motivation to complete hand exercises. This research sits within a larger study investigating hand function pre and post-conventional therapy and a new innovative virtual rehabilitation programme. Methods Twenty patients diagnosed with limited and diffuse cutaneous SSc (lcSSc and dcSSc), meeting the 2013 ACR criteria for SSc, were recruited from a tertiary referral rheumatology clinic (mean age: 55yrs; range 34-74yrs; female: n = 18; white British: 95%; dcSSc: n = 10; lcSSc: n = 10; mean mRSS: 10; mean age at diagnosis: 43yrs). All participants completed a novel questionnaire developed for this study to evaluate their experience with and motivation for completing hand exercises. Additionally, baseline characteristics were surveyed as well as a timeline of disease characteristics. Subsequent data analysis included Fisher’s exact testing and Spearman’s bivariate correlation. Results Half of all patients surveyed reported that hand function limited their ability to perform tasks of daily living, but they still retained independence. 65% (n = 13) of participants performed hand function exercises for a mean 25 weeks, with 30.8% being only a “little motivated”. A total of 65% were referred for physiotherapy. There was a strong positive correlation (Spearman’s rho 0.786) between older age at disease diagnosis and motivation to do hand exercises. However, there was no correlation (Spearman’s rho 0.027) between how motivated an individual was to do hand exercises and the number of weeks exercises were performed. The dcSSc group of patients were found to have performed hand exercises more than lcSSc (Fisher’s Exact Test, p = 0.03). Conclusion Across all patients, the lack of association between motivation and weeks of hand exercises completed indicates that there are barriers faced by patients with SSc who want to do physiotherapy. The strong correlation between the age at which the disease was diagnosed and a patient’s motivation to do physiotherapy is not supported by the available literature, as studies show that adherence to physiotherapy is associated more closely to education, socioeconomic background and social support. An additional independent study specific to age, with the consideration of confounders is necessary to explore this. An easy to use digital rehabilitation intervention could help actualise motivation and make physiotherapy more accessible. This needs to be validated in a larger cohort. Disclosures S. Addous None. J. Wood None. E. Eusterwiemann None. M.E. Anderson None.

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