Nearly 75% of patients with systemic sclerosis need specialist palliative care
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Key takeaways:
- Severe, overlapping symptoms emphasize the complex needs of patients with systemic sclerosis.
- Palliative care likely has much to offer in managing specific symptoms and reducing overall disease burden, the researchers said.
Nearly three-quarters of patients with systemic sclerosis demonstrate symptom burden that met the threshold for needing specialist palliative care, according to data published in Arthritis Care & Research.
“We are fortunate in our center to have a palliative care unit who are very interested in the implementation of supportive care management for patients with chronic, non-malignant disease,” Laura Ross, MBBS, PhD, of the University of Melbourne, told Healio. “Therefore, we have recognized an increased clinical need for extra assistance in the symptom management of systemic sclerosis, alongside the screening and organ-specific management we provide in our rheumatology clinic.
“However, we have noted that there is no literature available to assist in the implementation of palliative care interventions in systemic sclerosis,” she added.
To examine the need for palliative care in SSc, Ross and colleagues analyzed data from 875 adult patients enrolled in the Australian Scleroderma Cohort Study. Symptoms such as pain, depression and breathlessness, as well as overall health-related quality of life, were evaluated using patient-reported measures, while Cox proportional hazards regression identified those in need of specialist palliative care.
The need for palliative care was defined as “severe burden” from at least one symptom recorded during at least two consecutive study visits or 50% or more of a participant’s total study visits. Patients with severe symptom burden in the visit preceding their death were also included.
Overall, 72.69% of patients with SSc met the criteria for specialist palliative care needs, according to the researchers. The most common symptoms were severe fatigue (54.17%), breathlessness (23.66%) and severe constipation (21.14%). The greatest reductions in mental health quality of life, reported via Short Form 36, were associated with severe mood symptoms.
According to Ross, severe symptoms were “frequently overlapping.”
“This suggested to us that careful, disease-specific palliative care interventions may be required to address symptoms in systemic sclerosis, because of the risk for exacerbating one symptom with management of another symptom,” she said. “For example, analgesia exacerbating severe gastrointestinal symptoms.
“Our results suggest that, for some patients, early integration of symptom-directed care may be of benefit and that there may be a role for palliative care in the management of systemic sclerosis, as there is now recognized in diseases such as heart failure or neurodegenerative diseases.”
Perspective
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David A. McLain, MD, MACR, FACP, FRCP
Palliative care is essential for improving the quality of life for patients and families grappling with life-threatening illnesses. Through prompt identification, assessment and intervention, it alleviates symptoms, including pain, while addressing physical, psychosocial and spiritual challenges. Palliative care specialists offer treatment for a diverse range of diseases, traditionally focusing on cancer, cardiac issues, COPD, kidney failure, Alzheimer’s disease, Parkinson's disease, ALS and others.
However, palliative care has expanded beyond its conventional boundaries of terminal malignancy and end-stage organ failure. It now encompasses long-standing systemic rheumatic diseases, such as rheumatoid arthritis, vasculitis, scleroderma and lupus. This broader approach reflects a shift toward comprehensive and proactive care that blurs the line between palliative and disease-modifying treatments.
This evolution in palliative care emphasizes its compatibility with aggressive, advanced therapeutic approaches, debunking the notion that it solely involves the withdrawal of active management strategies. This trend underscores a holistic approach to patient care, addressing the needs of the whole individual.
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