P133 Experiences of people with digital ulcers through filmed interviews

Digital ulcers (DU) remain a huge burden to more than half of people with scleroderma (SSc). These ulcers impact the overall wellbeing of the affected patients, limiting hand functionality and activities of daily living. Literature shows considerable variability in care received according to access to specialist services. Evidence for the treatment and self-care needs of people with DU is lacking. The aim of the study was to understand patients’ experiences of living with DU and their unmet needs.

Experience Based Co-Design (EBCD) provided the research design. EBCD is a qualitative participatory approach that seeks to understand patients’ experiences and needs to assist collaborative input of patients and staff in the establishment of concepts and interventions to improve negative healthcare experiences. EBCD encapsulates six stages to understand, express and problem solve with people with the condition and healthcare providers. Expressing experiences (third stage) produces filmed patient interviews called a ‘trigger film’ to capture their narrative key points instigating joint conversations with staff to establish key priorities on patients’ needs and co-design them. This study was conducted at one site in UK between October 2023 - April 2024. Ethical approval was granted by the Health Research Authority and Health and Care Research Wales (REC Reference 23/NW/0206). Patients with a history of DU gave their written informed consent before enrolment into the study. Informed consent included film release permission for educational purposes.

15 participants undertook filmed interviews individually. Most of the participants were females 60% (n = 9). Participants’ age of SSc diagnosis was between 33.5 to 59.8 years old. The ethnicities were 67% (n = 10) White Caucasian, 20% (n = 3) Black, 7% (n = 1) Asian, and 7% (n = 1) mixed ethnic background. Twenty-seven percent (n = 4) developed first DU before SSc diagnosis. The final analysis identified three main themes: (1) Over-looked facets of pain experienced; (2) Navigating the initial DU to diagnosis; (3) Patients’ perspectives on meeting DU services and care needs. Participants expressed how DU pain impinged on everything they did. There were disappointments and frustrations experienced by participants when DU pain was reported and not acknowledged or was downplayed and not managed well by healthcare providers. Diverse ways in how participants forged through the path of the initial DU to diagnosis was reported, as some developed DU prior to SSc diagnosis. Most participants expressed the need for DU education for patients and healthcare providers.

The findings highlight the complexity of navigating DU in the context of SSc, identify needs of people with DU and how care can be improved. These findings will be considered in the collaborative co-design workshops, where staff and patients will discuss and prioritise the needs to be co-designed.

T. Ngcozana: Grants/research support; BSR Early Career Researcher Award, Royal Free Charity Patient Experience Award. S. Woodward: None. C. Denton: None. J. Sturt: None.