Patients With Severe Symptoms of Systemic Sclerosis May Benefit From Palliative Care

Among patients with systemic sclerosis, a significant proportion experience severe symptoms that qualify them for specialist palliative care, emphasizing the substantial impact of this disease on quality of life, according to results of a retrospective study published in Arthritis Care & Research.

While the use of palliative care is often associated with cancer diagnoses or end of life care, it has recently been recognized as an important management modality for those with a high burden of disease. Researchers investigated the use of palliative care among individuals with SSc to assess whether specialized treatment can assist in improving health-related outcomes.

Data on patient reported outcome measures (PROMs) were taken from the Australian Scleroderma Cohort Study. Adult patients diagnosed with definite SSc according to the American College of Rheumatology/European Alliance of Associations for Rheumatology criteria were eligible for inclusion.

Specific PROMs were completed at each annual visit, including assessments of pain, depression, anxiety, fatigue, gastrointestinal symptoms, breathlessness, and overall quality of life and function. Only patients who had completed at least 1 of these PROMs were included in the analysis.

The primary outcome of interest was the need for specialist palliative care, defined as  severe symptoms that persisted for at least 2 consecutive study visits or were recorded during at least half of a participant’s total visits. Patients who had severe symptoms at the visit immediately before their death were also considered to have specialist palliative care needs.

The analysis included 875 patients aged a median of 47.11 years at disease onset, with 23% having diffuse cutaneous SSc. Patients were followed for a median of 7.33 years. During the follow-up period, 72.69% of patients had specialist palliative care needs and 93 patients died during this period.

Compared with those who did not have palliative care needs, patients with these needs were found to have a longer disease duration at recruitment (6.76 vs 4.36 years; P <.01) and a more than 2-times higher mortality rate during follow-up (12.74% vs 5.02%; P <.01). Results of the Kaplan Meier survival analysis showed that one-quarter of patients developed palliative care needs within 4 years of diagnosis, increasing to more than 60% within 10 years.

Patients with specialist palliative care needs commonly experienced severe fatigue (n=474; 54.17%), breathlessness (n=207; 23.66%), and constipation (n=185; 21.14%).

Additionally, significant pulmonary involvement — in the form of interstitial lung disease (hazard ratio [HR], 1.14; P =.02) and pulmonary arterial hypertension (HR, 1.60; P <.01) — and myositis (HR, 1.29; P <.01) were all independently associated with the need for specialist palliative care.

No formal definition for palliative care needs exists for patients with SSc, which was cited as a study limitation. Additionally, the surrogate definition of palliative care needs used throughout this study did not extend to patients experiencing multiple mild to moderate SSc-related symptoms, though these situations may be equally as debilitating.  

“It seems likely that palliative care has much to offer SSc patients in the active management of specific symptoms and reduction of the overall burden of disease,” the study authors concluded.

Disclosure: One or more of the study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.

This article originally appeared on Rheumatology Advisor