{
  "abstract": "Introduction Hand function impairment is common in systemic sclerosis (SSc), yet the specific symptoms, patient experiences, and clinical needs remain insufficiently defined. A deeper understanding of these aspects from the patient’s perspective is essential to improve care and develop tailored interventions. This study aimed to explore the patient-perceived determinants and impact of hand function impairment in SSc, as well as unmet care needs related to hand function.Material and Methods Adult patients with SSc were included from the University Medical Centre Utrecht, the Netherlands, and Royal Free Hospital London, United Kingdom (UK). Face-to-face semi-structured interviews were conducted, transcribed verbatim, and coded. Thematic analysis was performed to identify key themes. Hand function was evaluated using the modified Hand Mobility in Scleroderma (mHAMIS) and the Cochin Hand Function Scale (CHFS).Results Thirty-three patients were included (N=18 in the Netherlands, N=15 in the UK), consisting of 25 females (76%) and 8 males (24%), with a median (IQR) age of 60 (48-67) years, median (IQR) disease duration of 8 (3-13) years, median (IQR) mRSS of 8 (4-16) points, median (IQR) mHAMIS of 4 (2-8) points, and median (IQR) CHFS of 36 (25-47) points. Three main themes were identified: symptoms, impact, and (un)met needs, all further subdivided into sub-themes and codes. Participants reported a wide range of medical symptoms, including Raynaud’s phenomenon, skin thickening, and infections, as well as symptoms related to hand function such as pain, stiffness, and weakness. These symptoms severely affected daily tasks, work, and hobbies, with significant psychological and social implications. Management strategies included the use of specialized tools, exercises, and medications, although patients expressed mixed experiences with healthcare professionals. The progression of hand function impairment varied among patients, with most experiencing worsening symptoms over time. While participants felt that patient education was sufficient when healthcare professionals addressed hand impairment, many reported a lack of tailored support and insufficient recognition of hand-related problems.Conclusions Hand function impairment in SSc has a profound impact on multiple domains of patients’ lives, requiring comprehensive management and better support from healthcare professionals. Greater attention to individual symptoms and personalized management strategies is needed to address this unmet clinical need effectively.",
  "authors": [
    {
      "affiliations": [
        "University Medical Centre Utrecht, Utrecht, The Netherlands"
      ],
      "name": "Mark Greveling"
    },
    {
      "affiliations": [
        "Royal Free Hospital and University College London, London, UK"
      ],
      "name": "Stefano Rodolfi"
    },
    {
      "affiliations": [
        "University Medical Centre Utrecht, Utrecht, The Netherlands"
      ],
      "name": "Nora El Bardai"
    },
    {
      "affiliations": [
        "Royal Free Hospital and University College London, London, UK"
      ],
      "name": "Chris Denton"
    },
    {
      "affiliations": [
        "National Association for People with Lupus, Systemic Sclerosis, Antiphospholipid Syndrome, and Mixed Connective Tissue D, Utrecht, The Netherlands"
      ],
      "name": "Rita Schriemer"
    },
    {
      "affiliations": [
        "Scleroderma & Raynaud’s UK (SRUK), London, UK"
      ],
      "name": "Nick Jeffries-Owen"
    },
    {
      "affiliations": [
        "Royal Free Hospital and University College London, London, UK"
      ],
      "name": "Voon Ong"
    },
    {
      "affiliations": [
        "University Medical Centre Utrecht, Utrecht, The Netherlands"
      ],
      "name": "Lieke Tweehuysen"
    },
    {
      "affiliations": [
        "University Medical Centre Utrecht, Utrecht, The Netherlands",
        "Royal Free Hospital and University College London, London, UK"
      ],
      "name": "Julia Spierings"
    }
  ],
  "title": "P.309 Patient perspective of hand function impairment in daily life with systemic sclerosis",
  "uid": "a831a7bd-9b17-562f-9786-8e41de739f13"
}