Background Systemic sclerosis, also known as scleroderma, is a complex, multi-organ disease which causes substantial and progressive fibrosis of the skin and internal organs, including the heart and lung. It is an uncommon disease, associated with early onset of significant and persistent symptoms, impaired quality of life, and shortened lifespan. International guidelines recommend early, integrated palliative care for patients with advanced cardiopulmonary disease such as heart failure, and interstitial lung disease, as this care can improve patient, caregiver and health care outcomes. However, there is no evidence examining the role of palliative care in systemic sclerosis. St Vincent’s Hospital Melbourne has piloted a clinic of early, integrated palliative care for patients with advanced systemic sclerosis.

Aim This study aims to describe the model of care provided within the clinic, by describing the tasks completed by the palliative care physician for each patient over the course of their palliative care reviews.

Methods This pilot program was conducted at St Vincent’s Hospital Melbourne. Triggers for referral to the clinic included patients with a high symptom burden, physician-perceived poor prognosis, or who requested advance care planning or future care discussion. Descriptive data quantified the care provided at each review.

Results Between 06/07/23 and 16/05/24 twenty-four patients received 51 clinic reviews (61% face to face, 31% phone, 8% telehealth). Nineteen patients identified a primary caregiver, and caregivers attended 22/51 (43%) of reviews. The median patient age was 67 years (range 19–87), and 58% were female. 54% of patients had diffuse disease subtype, with the median time since systemic sclerosis diagnosis 9.5yrs (range 0–40). Most patients had limited function, with a median Australia-modified Karnofsky Performance Status of 60 (range 40–80). Non-pharmacological symptom management was discussed with 83% of patients, and pharmacological management in 88%. A change in disease directed management was enacted for 46% of patients, while 42% of patients were referred for further investigation(s). Psychosocial/spiritual assessment and support was provided for 96% of patients. Discussion of formal community supports was common (71%), with 46% of patients requesting referral for supports. Serious illness communication was offered to all patients and accepted for diagnostic/illness discussion by 88% of patients, while 58% engaged in a prognostic discussion. The majority of patients had an advance care planning discussion (83%); 38% of patients completed an advance care directive, 46% completed a medical power of attorney, and 8% had a voluntary assisted dying discussion. Interdisciplinary discussion was prominent, with 83% receiving informal multidisciplinary discussion, and 33% formal multidisciplinary discussion. 17% of patients accessed palliative care unit for admission, while 29% were under community palliative care, and two (8%) patients died.

Discussion This is first integrated palliative care clinic for systemic sclerosis described internationally. This clinic provided attention to symptom management alongside interdisciplinary discussion, and disease orientated care. Patients accepted the opportunity to discuss their illness and plan for their future. Further research is planned to evaluate the outcomes of the clinic, and understand the patient, caregiver and health care perspectives of this model of care.