{
  "abstract": "Introduction Skin fibrosis is a defining feature of systemic sclerosis (SSc), yet its impact on quality of life (QoL) from the patient’s perspective remains underexplored. A key question is whether patient-reported assessments of skin involvement align with physician evaluations and composite activity scores, emphasizing the potential value of patient-reported outcome measures (PROMs) in SSc.The study aimed to explore potential associations between the modified Rodnan skin score (mRSS) and baseline SSc characteristics, and to assess the reliability and utility of PROMs, such as ScleroID, in capturing disease activity and its impact on QoL in SScMaterial and Methods 74 unselected SSc patients were evaluated at baseline. Patients were stratified based on mRSS and SSc subtype. Disease activity was quantified using the Scleroderma Clinical Trials Consortium Activity Index (SCTC-AI), European Scleroderma Study Group Activity Index (EScSG-AI), and Medsger severity scale (MSS). Patient-perceived disease impact was evaluated using the ScleroID questionnaire. Spearman correlation analyses and comparisons of mean values were performed for the selected outcomesResults 51% patients had limited cutaneous SSc (lcSSc), 68% had a mRSS below 14. Mean age was 57.5 years, disease duration 10.9 years and mean mRSS was 12.3 (SD 9.6). Patients with an mRSS above 14 had higher disease activity, with significantly higher SCTC-AI (p=0.005), EScSG-AI (p<0.0001), and MSS (p=0.004), but no significant difference in the total ScleroID score (p=0.14) or its subdomains compared to those with an mRSS below 14. Although mRSS values correlated with SCTC-AI (r=0.45, p<0.01) and MSS scores (r=0.37, p=0.001), no correlation was found with the total ScleroID score or its subdomains for hand function, body mobility, or limitations in life choices. When patients were stratified by limited versus diffuse cutaneous involvement, those with dcSSc had significantly higher ScleroID scores in the hand function (p=0.02) and body mobility (p=0.01) subdomains. However, these scores showed only weak correlations with disease activity and severity measures.Conclusions While the mRSS effectively assesses the physical severity of skin involvement, it does not fully capture the broader impact on QoL. The weak correlations between the ScleroID subdomains of hand function and body mobility and clinical measures suggest they may not fully reflect clinical severity or could be influenced by other factors. Further research is required to validate ScleroID as a potential PROM for assessing the impact of skin fibrosis on QoL in future SSc clinical trials.",
  "authors": [
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania"
      ],
      "name": "Groseanu Laura"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania"
      ],
      "name": "Nita Cristina"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania"
      ],
      "name": "Boromiz Catalina"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania",
        "Carol Davila University of Medicine and Pharmacy, Bucharest, Romania"
      ],
      "name": "Mardale Denis"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania",
        "Carol Davila University of Medicine and Pharmacy, Bucharest, Romania"
      ],
      "name": "Bojinca Violeta"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania",
        "Carol Davila University of Medicine and Pharmacy, Bucharest, Romania"
      ],
      "name": "Mazilu Diana"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania"
      ],
      "name": "Ilie Cristian"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania",
        "Carol Davila University of Medicine and Pharmacy, Bucharest, Romania"
      ],
      "name": "Opris-Belinski Daniela"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania",
        "Carol Davila University of Medicine and Pharmacy, Bucharest, Romania"
      ],
      "name": "Cobilinschi Claudia"
    },
    {
      "affiliations": [
        "Sfanta Maria Clinical Hospital, Bucharest, Romania",
        "Carol Davila University of Medicine and Pharmacy, Bucharest, Romania"
      ],
      "name": "Balanescu Andra"
    }
  ],
  "title": "P.215 Impact of skin fibrosis on quality of life in systemic sclerosis: a comparative analysis of clinical measures and patient-reported outcomes",
  "uid": "ce2a1146-ee65-5211-9b61-81fa91579bc3"
}