SAT0509 How money should be spent: patients perspectives on scleroderma research funding
Authors: S. Divani, J. Patel, R. Stratton
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Scleroderma (systemic sclerosis, SSc) is an autoimmune disease that can affect blood vessels, skin and various organs, causing Raynaud's phenomenon, thickening of skin, gastro-oesophageal reflux and lung fibrosis. Despite remarkable improvements and innovations in management for SSc, leaders in the field continue to believe there is scope for more.<sup>1</sup> Patients' opinions on future research into the condition and its management, can provide valuable insight on how to shape its prospects and improve outcomes, and how research funding should be best directed.<sup>2</sup> <h3>Objectives</h3> To determine if doctors and patients with scleroderma agree on where future scleroderma research should be focussed. <h3>Methods</h3> 25 patients with scleroderma and 10 doctors were given questionnaires that asked them to rank 12 issues in order of importance, with a view to directing future Scleroderma research and funding. The highest ranked issue was appointed a score of 12, and the lowest ranked appointed a score of 1. The mean scores were calculated, and compared for concordance using ANOVA testing. All patients had been admitted for elective Iloprost infusions at Royal Free Hospital and varied in age and gender. The clinicians were of varied levels from FY1-consultant, and all worked in the Rheumatology team at Royal Free. <h3>Results</h3> Patients ranked the issue of "managing Raynaud's symptoms" as the most important, which is significantly different to how clinicians viewed it – patients gave it a ranking 9.8 compared to only 4.9 from clinicians (p&lt;0.005). However, doctors placed more value on "avoiding organ involvement" (10.4 from clinicians and 7.67 from patients (p&lt;0.005)). Patients and clinicians, however, agreed about the least important issues, scoring "medication side effects" 3.6 and 3.1 respectively, "social and psychological support" 3.7 and 4.0, and "family planning and genetics" 3.8 and 3.6. They also agreed that research should be targeted at finding "new treatments that stop disease progression" which scored highly in both groups (9.7 in patients, 10.5 in clinicians). <h3>Conclusions</h3> Patients appear to feel that Raynaud's symptoms are affecting their quality of life in a way that is not being appreciated as important by clinicians. This may be due to ineffective communication between them, perhaps due to the time constraints of appointments. Contrastingly, doctors are more concerned about avoiding organ involvement compared to patients, perhaps as they are more aware that organ involvement has a much greater effect on prognosis. However, both patients and clinicians were equally committed to investigating mechanisms of this disease. Overall, these findings between doctors and patients should not just be a point of focus for future funding and research. It can be used to identify where there are differences in expectations during clinical encounters, and therefore allow us as clinicians to tailor our agenda to better meet the needs of our patients, which would likely improve the patient-doctor relationship, enhancing communication in clinic appointments. <h3>References</h3> [1] The Lancet. Systemic sclerosis: advances and prospects. The Lancet2017;390(10103):1624. [2] Sumpton D, Thakkar V, O'Neill S, Singh-Grewal D, Craig J, Tong A. "It's Not Me, It's Not Really Me." Insights From Patients on Living With Systemic Sclerosis: An Interview Study. Arthritis Care &amp; Research2017;69(11):1733–1742. <h3>Disclosure of Interest</h3> None declared