{
  "abstract": "Objectives Lupus affects around 3,100 people within Wales’s population of 3.1 million. As a nation with a devolved healthcare system, understanding the quality of care is essential. However, previous audits by the British Society for Rheumatology and Wales Rheumatology Speciality Advisory Group (2018-2021) lacked patient input. To address this, the Welsh Government commissioned CEDAR (Centre for Healthcare Evaluation, Device Assessment and Research), an independent NHS research group, to conduct a national evaluation. The aims of the evaluation were to:1. Gather in-depth service-user and clinician perspectives.2. Identify strengths and challenges in lupus care.3. Inform actionable, patient-centred recommendations for service improvement.Methods A mixed-methods evaluation included: a bilingual national service-user survey (n=288) co-designed with patients and Lupus UK; 15 online interviews; 4 online focus groups (n=15); and a clinician survey (n=17). The patient survey used a dual-dissemination strategy: one arm distributed by clinicians to clinically coded patients, the other shared online with the lupus community by a patient representative, and by charities via social media. This maximised reach, capturing individuals at different stages of their lupus journey. Data underwent descriptive and thematic analysis.Results The evaluation identified significant variability in patient experiences. Strengths included patient access to both Consultant care and biologic treatments. Key challenges focused on poor access to urgent care during flare-ups, inadequate emotional/mental health support, inter-speciality fragmented care, and low lupus awareness among non-specialists. The findings provided a clear mandate for more responsive, holistic lupus services.Conclusions The 2025 report’s recommendations informed national service management plans, supported by the Musculoskeletal (MSK) Strategic Clinical Network. Impacts include: 1. A new practice of rheumatology clinicians writing directly to patients; 2. Plans for a regular rheumatology and renal MDT; and 3. Improved awareness and access to Psychology services. Patient representative feedback suggests that the evaluation has validated the emotional impact of the disease, but this will need to be translated into tangible improvements in care. This evaluation highlights the value of co-production between clinicians, researchers, and patient organisations in helping to improve patient care and outcomes.",
  "authors": [
    {
      "affiliations": [
        "Centre for Healthcare Evaluation, Device Assessment and Research (CEDAR), Cardiff and Vale University Health Board, Cardiff, UK"
      ],
      "name": "Michael Beddard"
    },
    {
      "affiliations": [
        "Centre for Healthcare Evaluation, Device Assessment and Research (CEDAR), Cardiff and Vale University Health Board, Cardiff, UK"
      ],
      "name": "Kathleen Withers"
    },
    {
      "affiliations": [
        "Lupus UK, Essex, UK"
      ],
      "name": "Caroline Olshewsky"
    },
    {
      "affiliations": [
        "Rheumatology Clinical Implementation Network, NHS Wales Performance and Improvement, Cardiff, UK"
      ],
      "name": "Ceril Rhys-Dillon"
    }
  ],
  "title": "PO:10:271 From patient voice to clinical practice: recommendations from the national evaluation of the lupus service in NHS wales",
  "uid": "55bad07a-70a0-51dc-a7f2-345a5248bbf0"
}