Early, integrated systemic sclerosis palliative care for patients and their caregivers: description of a new model of care.

Abstract

Objectives: SSc is a complex, multiorgan disease, associated with the early onset of significant symptoms, impaired quality-of-life and increased mortality due to cardiopulmonary disease. While palliative care could potentially impact the quality of life of patients and caregivers, there is currently no evidence that examines the role or efficacy of palliative care in SSc. This study describes the model of care provided in a clinic of early, integrated palliative care for patients with advanced SSc and their caregivers at a tertiary hospital.

Methods: A prospective audit of the palliative care clinic's model of care was conducted during its first 12 months. Descriptive data quantified which aspects of care the patients and caregivers engaged with.

Results: Between 01/07/2023 and 01/07/2024, 24 patients received 52 clinic reviews. Disease-directed management was changed for 50% of patients. Pharmacological management was prescribed for 88%. Psychological assessment and support was provided for 96% of patients and caregivers, while social support assessment was conducted for 100%. The majority of patients (88%) accepted serious illness discussion, while 58% engaged in a prognostic discussion. Advance care planning discussions were common (83%), while 42% of patients completed an advance care directive and 46% completed a medical power of attorney. Informal multidisciplinary team discussion occurred for 83% of patients.

Conclusion: This clinic provided disease-orientated, multidisciplinary care alongside symptom management, psychosocial support and serious illness communication. The high uptake of key tasks signals a previously unmet palliative care need and suggests this model of care may be acceptable to patients and caregivers.