Abstract Background/Aims Healthcare professionals (HCPs) still find systemic sclerosis digital ulcers (SSc DU) a challenge to treat. Studies reveal wide differences in patient care. These stem from access to specialist services. No studies have explored experiences of HCPs looking after patients with SSc DU. The aim of the study was to find out how patients were cared for in one tertiary centre, and ideas for DU care improvements. Methods This study was part of a larger project conducted using experienced-based co-design (EBCD). EBCD is qualitative participatory action research made up of six stages. The second stage is engaging with HCPs and gathering their experiences of a service. Ethical approval was granted (REC Reference 23/NW/0206). Consultation observations and semi-structured interviews were held between October 2023 and May 2024 with HCPs working in a SSc unit who gave consent to participate in the study. Results 15 DU consultations were observed, and 10 HCPs were interviewed. The team was made up of 2 (20%) consultant rheumatologists, 2 (20%) overseas clinical fellows, 3 (30%) clinical nurse specialists, 1 (10%) junior clinical fellow and 2 (20%) registrars. HCPs’ experiences of DU care spanned from 7 months to 15 years. 90% had a first encounter of a patient with DU, the same year as they encountered a patient diagnosed with SSc, except for one who had encountered a patient with DU prior to SSc diagnosis. The tertiary centre settings where patients with DU were encountered included the SSc outpatient clinics, in-patient wards, day unit, DU clinic and clinical trials unit. Three core themes were identified: (i) differences in DU care approaches; (ii) professional development in this rare speciality; (iii) re-designing services. Variations were observed in DU enquiry according to the setting, which determined the depth and extent of enquiry. Analysis of consultations observed showed two types of consultations: freestyle or natural, and pre-planned or formulated according to the HCP experience. HCPs expressed how they developed skills and knowledge, moreover, by learning from nursing colleagues. They also shared their vulnerabilities in skill and knowledge lacking in DU care for themselves and in general. How DU care could be improved through upscaling skills and knowledge through training was highlighted. HCPs commented on complex structural barriers that patients face in accessing quality care, improving service delivery, collaborating with HCPs in primary and secondary care to improve DU care, and supporting patient self-care. Conclusion The study shows that there remain unmet needs in DU-specific training, which halts HCPs from providing DU holistic care. Among the diverse challenges expressed, access to DU care was an inequality that was mostly discussed. Various service improvements were proposed, as well as how they could be addressed - especially DU education. Disclosure T. Ngcozana: Grants/research support; BSR Early Career Researcher Award, Royal Free Charity Patient Experience Award. S. Woodward: None. J. Sturt: None. C. Denton: None.
Ngcozana et al. (Wed,) studied this question.