Background St Vincent’s Hospital Melbourne cares for the largest cohort of patients with scleroderma (also referred to as systemic sclerosis) in Australia, and physicians recognised potential unmet supportive and palliative care needs of patients and their caregivers. In response, a pilot integrated palliative care outpatient clinic (the Scleroderma Supportive Care Service (SSCS)) was commenced, collocated within the usual rheumatologist-run Scleroderma Clinic.

Aim This qualitative study explored patient and caregiver satisfaction of the SSCS. It aimed to identify what interventions were perceived as helpful and if further modification of the pilot clinic was needed.

Methodology Patients and their caregivers who attended at least one SSCS appointment were contacted post attendance and invited to participate in a semi-structured interview conducted via telephone. Interviews were audio recorded, transcribed and analysed. A reflexive thematic analysis approach guided the data analysis.

Results Twelve interviews were completed.

Five major themes described the data set:

1. Communication Style. Patients reported the palliative care physician was supportive, encouraging and empathetic. Difficult conversations were approached gently and respectfully and if requested, discontinued. The time and opportunity to explain their unique experiences and those of the caregiver was highly valued.

2. Coping with scleroderma. Many patients spoke of their resilience in the face of chronic disease and future uncertainty. Loss of function, loss of social agency and increasing dependency were spoken about with mixed feelings: patients described appreciation of the caregiver, finding joy in each day, and acceptance of a new normal. Denial, sadness and grief associated with living with scleroderma were frequently expressed.

3. Caregiving Role. Caregivers reflected on their responsibility to provide practical care, medication and symptom management, and coordination of care. They described their desire to be involved in clinical discussions and highlighted the impact of the unpredictability of this chronic disease.

4. Role of the SSCS. Some patients and caregivers were confronted by the ‘palliative care’ label, yet this was balanced by the value gained from symptom management, disease explanation and future care discussions. Patients valued coordinated and specialist care from the inter-disciplinary clinic team who they voiced understood the complexity of their rare condition.

5. Serious Illness Conversations. There were diverging views regarding acceptance of discussions relating to the seriousness of the disease, prognosis, advance care planning and future care supports. Patients and caregivers varied from pragmatic acceptance, and being well prepared, to fearful denial of any future care discussion and a strong preference to avoid any discussion about any future, increased care needs.

Discussion This integrated inter-disciplinary palliative care clinic was found to be both acceptable and valued by patients and caregivers. Those interviewed emphasized they appreciated time to describe their experience, discuss their disease and explore symptom management. Future palliative care engagement should be sensitive to the diversity of responses to serious illness conversations, and further explore patient and caregiver perceptions of palliative care.