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P.297 Face to face scleroderma family day patient feedback

jsrd · 2026-06-05 · canonical JSON source

6 visible annotations · policy: published · automated confidence ≥ 75.00%

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Introduction Scleroderma (SSc) Family Day is an annual education event for patients and relatives that was initiated in 1996. SSc is a burdensome condition that can make patients feel isolated and worried due to its rarity. SSc sufferers usually have several comorbidities and complications, resulting in quite a lot of unmet needs. The main aims of Family Day is to offer patient education with series of seminar presentations with opportunities to engage with clinical and research staff and members from Scleroderma and Raynaud’s UK. During the Covid-19 pandemic the Family Day was carried out virtual, but in 2024 and 2025 it returned to a face-to-face event. The aim of this questionnaire survey was to gather feedback from patients and relatives’ experiences of attending the face-to-face scleroderma family day event.Material and Methods Two single-point questionnaires were distributed to all attendees in 2024 and 2025 Family Day events. The questionnaire consisted of questions about attendees’ demographics, experience on their travel to venue, the venue, content of the event, patient participation in research activities and overall event opinions, as well as suggestions for future events.Results 69 of the 160 attendees returned the completed questionnaire, with average ages from 55-64. 80% of attendees were female in both years. There was a decrease in train travel and ethnicity diversity in 2025 compared to 2024. Most attendees in both years reside within London, but 2025 there was a wider geographical representation across England. The event was rated as excellent by 70% of the attendees with the remaining 30% rating good. 42% of attendees attended the event for the first time, with 27% recurrent attendees Patient engagement was broadly praised in particular research blood and skin biopsy, visits to stands and research laboratory.In contrast to the 2024 venue that was deemed too cold, 2025’s venue was highlighted to be too hot. Although attendees in 2025 felt that the talks were catered more towards medical personnel instead of patients, 67% and 30% deemed the event very important and important respectively, commenting that the event made them feel less alone. Ideas for future events included testimonies from patients, general wellbeing and overlap connective tissue diseases.Conclusions The SSc Family Day is a very important calendar event highlight for patients and relatives, where they can learn more about the condition, research with opportunities to interact with staff and other patients. Our survey suggests that patient engagement is important in planning future seminars.