THU0719-HPR Non-pharmacological care in systemic sclerosis: room for improvement?
Authors: J.K. Stöcker, J. Spierings, C.H.M. van den Ende, M.C. Vonk
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Although health professional (HP) treatment is considered to be a corner stone in the management of systemic sclerosis (SSc), little is known about the referral process to and the content of non-pharmacological care in SSc. <h3>Objectives</h3> To describe the contribution of HP to SSc care from the perspective of SSc patients, including the referral process, use of care provided by HP, treatment targets and outcome satisfaction. <h3>Methods</h3> Dutch SSc patients from different hospitals were invited through their rheumatologists (RT) to complete an still ongoing online survey provided by the ARCH (Arthritis Research and Collaboration Hub) working group, containing questions on a wide range of issues within SSc care. Items concerning access to care (referral versus direct access), use of HP services, and quality of care perceived by patients assessed by the CQ Index were extracted to answer the research question. Reasons for referral/direct access and treatment targets were examined by means of open questions. <h3>Results</h3> On January 10th, 2018, 433 SSc patients, 73% women (n=317), with a median age of 61 (SD=10,81) completed the survey. 38% of the patients had limited and 23% diffuse cutaneous SSc. The mean time since diagnosis was 4,1 years. In total, 10 different HP disciplines were reported and 76% (n=331) of the patients ever had contact with one or more HP; 50% (n=215) had contact with a HP in the past year. Compared to the other 9 disciplines named, physiotherapists (PT) were the most often referred to; 57% (n=245) had PT treatment since SSc onset, 41% (n=177) in 2017, whereas only 35 were referred to occupational therapists and 9 to hand therapists (figure 1). Rheumatologists (RT) were the main referrers to HP care with 49% (n=106); 27% (n=59) sought care by one or more HP through direct access in the past year. A total of 52% (n=111) of the 215 patients that received HP treatment in 2017 perceived the collaboration between their RT and the treating HP as insufficient and 68% (n=146) reported that RT and HP did not make good agreements with each other. Further, 45% (n=97) of the patients felt that there was no coordination between the referrers and the HP about advices issued. 76% (n=164) of respondents found their HP sufficiently competent for SSc treatment. 73% (n=156) could cope better with their complaints after the treatment and reported improvement in their daily activities. Qualitative analysis of the data on the PT as main HP treatment provider in 2017 yielded 36 different referral reasons and 42 treatment targets, of which the most frequently mentioned (&gt;4) are shown below. Most frequent reasons for referral and therapeutic objectives physio therapy Referral reasons: pain, joint problems, shoulder problems, decreased mobility, back problems, muscle weakness/stiffness/ pain and general stiffness. Treatment targets: improvement of general mobility, joint mobility, condition, muscle function, skin flexibility and hand function, pain relief, stiffness avoidance and fatigue reduction. <h3>Conclusions</h3> HP treatment is a meaningful part of SSc care, as reflected in the satisfaction of SSc patients. The results describe a suboptimal communication between RT and HP. In view of other published studies on hand problems in SSc, a surprisingly small amount of referrals to occupational- and hand therapists. Further research should focus on the optimisation of professional communication. <h3>Disclosure of Interest</h3> None declared