{
  "abstract": "Introduction For people living with systemic sclerosis (SSc), organ damage often occurs early and is permanent, leading to chronically impaired function and severe symptoms. Symptom assessment and symptom control remain a clinical and research challenge in SSc.Early palliative care is recommended for incurable cancer and severe cardiopulmonary disease, where it improves quality of life and reduces symptom burden. However, the need, role and efficacy of palliative care in SSc remains unclear.This study describes the severity of symptoms and the potential need for palliative care in SSc patients using:The revised Edmonton Symptom Assessment System (ESAS-r), validated in cancer and cardiopulmonary disease, measuring 9 symptoms on 0–10 numerical rating scales.1The Systemic Sclerosis Impact of Disease (ScleroID) questionnaire, developed with patients and validated in SSc, assessing 10 SSc-specific symptoms on 0–10 numerical rating scales.2Material and Methods This prospective study invited all individuals attending the St Vincent’s Hospital Melbourne SSc clinic to complete the ESAS-r and ScleroID. Descriptive statistics summarised symptom severity at first response. Severity thresholds followed cancer-validated ESAS-r thresholds: none (0), mild (1–3), moderate (4–6) and severe (7–10).1 Potential need for specialist palliative care was defined as total score 23 or higher, as validated in cancer. 3Results Between 03/06/2024 and 20/02/2025, 165 questionnaires were returned from 107 respondents. Median age was 62 years (IQR 16), 84% were female and 24% had diffuse SSc. Symptom severity distributions are shown in figure 1 for ESAS-r, and figure 2 for ScleroID.Notably, ScleroID captured severe symptoms missed by ESAS-r, including severe Raynaud’s (32/107, 30%), severe impaired hand function, lower gastrointestinal symptoms, and limitations in life choices and activities (24/107, 22% each).Specialist Palliative Care referral thresholds 23 or higher revealed ScleroID detected higher referral rate (71/107, 66.4%) than ESAS-r (48/107, 44.9%). Five patients (4.7%) were identified for referral only by ESAS 23 or higher, while 28 (26.2%) were identified only by ScleroID 23 or higher.Conclusions While useful in other settings, the ESAS-r fails to detect prevalent burdensome symptoms unique to SSc. ScleroID more comprehensively reflects disease burden and identifies a substantially larger proportion of patients with unmet palliative care needs. These findings support the use of ScleroID to capture the spectrum of symptoms and could help determine the timing and evaluate the efficacy of palliative care integration in SSc.References Hui D, Bruera E. JPSM 2017.Becker MO, et al. Ann Rheum Dis. 2022.Rodin R, et al. CM 2022.Abstract P.301 Figure 1ESAS-r severity score distribution in systemic sclerosis (n=107)Abstract P.301 Figure 2ScleroID severity score distribution in systemic sclerosis (n=107)",
  "authors": [
    {
      "affiliations": [
        "The University of Melbourne, Melbourne, Australia"
      ],
      "name": "Julie Mcdonald"
    },
    {
      "affiliations": [
        "The University of Melbourne, Melbourne, Australia"
      ],
      "name": "Laura Ross"
    }
  ],
  "title": "P.301 Defining the symptom severity and palliative care needs of patients with systemic sclerosis",
  "uid": "81353389-0643-5601-920f-a720882e67ac"
}