{
  "abstract": "Introduction Digital ulcers (DU) significantly affect over half of those with scleroderma (SSc). This research captures first hand accounts. It explores how these ulcers affect daily life. Understanding these personal stories is important. It helps us grasp the real impact of DU. We learn about the challenges faced by those affected. Their insights offer valuable perspectives and their self-care needs.Material and Methods The research used Experience Based Co-Design (EBCD) which is a qualitative participatory research approach. It explores patients’ experiences and needs. It helps patients and clinicians work together, to create ideas and changes for better healthcare. EBCD has six steps. The third step involves making a film of patient interviews which highlights key parts of patients’ stories. This initiates discussions between clinicians and patients to identify patient needs which can be co-designed.This was a UK single site study 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). Participants diagnosed with a history of DU provided their written consent before participating in the research and signed a film release permission for educational purposes.Results 15 participants were involved in the filmed interviews. Most of the participants were females 60% (n=9). The ethnicities were 67% (n=10) white Caucasian, 20% (n=3) Black, 7% (n=1) Asian and 7% (n=1) mixed race origins. 27% (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 almost all aspects of daily life. 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. Participants described various ways they went through from the initial DU development to diagnosis, as some developed DU prior to SSc diagnosis. Most participants expressed the need for DU education for patients and healthcare providers.Conclusions The findings highlight the challenges that people with DU undergo in the context of SSc and help identify their DU care needs. The findings of this study were considered in the collaborative co-design workshops, where clinicians and patients discussed and chose the top priority needs to be co-designed.",
  "authors": [
    {
      "affiliations": [
        "Rheumatology Clinical Trials, Royal Free NHS Foundation Trust, London, UK, London, United Kingdom"
      ],
      "name": "Tani Ngcozana"
    },
    {
      "affiliations": [
        "Kings College London-Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, London, UK, London, United Kingdom"
      ],
      "name": "Sue Woodward"
    },
    {
      "affiliations": [
        "Kings College London-Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, London, UK, London, United Kingdom"
      ],
      "name": "Jackie Sturt"
    },
    {
      "affiliations": [
        "Rheumatology Clinical Trials, Royal Free NHS Foundation Trust, London, UK, London, United Kingdom"
      ],
      "name": "Chris Denton"
    }
  ],
  "title": "P.189 Filmed interviews elucidate diverse patient experiences with digital ulcers",
  "uid": "6dbb86cb-7c11-5ada-bfcc-a3dd174ac1c9"
}