Seven in 10 patients with systemic sclerosis could benefit from specialist palliative care to manage severe symptoms such as pain and breathlessness affecting their quality of life, an Australian study suggests.
But a major barrier to palliative care access for patients with chronic disease was the misperception among patients, carers and doctors that palliative care was only relevant in the last few days to weeks of life, the researchers said.
They used data from 875 patients with systemic sclerosis (SSc) enrolled in the Australian Scleroderma Cohort Study, who had a median age of 47 at disease onset.
Patients were followed for seven years with a median seven study visits.
Findings published in Arthritis Care & Research [link here] showed that almost three-quarters (72.69%) of patients met the threshold for specialist palliative care needs, which was defined as having a high-symptom burden that persisted for at least two consecutive study visits or for at least half the overall study visits.
Patients with palliative care needs had a longer disease duration at recruitment, poorer quality of life, poorer function and a higher mortality during follow-up compared to those without palliative care needs, the researchers reported.
Regarding symptoms of this group, severe fatigue (54%) was most commonly reported, followed by breathlessness (24%) and severe constipation (21%).
The researchers noted concurrent severe symptoms were frequently observed.
Older age at systemic sclerosis onset and longer disease duration at recruitment were each associated with an increased risk of developing palliative care needs.
Significant pulmonary involvement, myositis, digital ulcers, and both upper and lower gastrointestinal involvement were independently associated with palliative care need, but not a history of scleroderma renal crisis or myocardial involvement.
Severe breathlessness and pain were associated with the largest reductions in physical quality of life, while severe mood symptoms such as depression or anxiety were associated with the greatest reduction in mental quality of life.
Severe pain, breathlessness and mood symptoms significantly impacted function.
“Patients with SSc have identified that improved quality of life is one of the most important indicators of high-quality care. However, it is has been observed that SSc therapies associated with improvement in physiological parameters fail to result in improvements in symptom burden, function and quality of life,” wrote the researchers, which included Professor Mandana Nikpour, a rheumatologist at the Royal Prince Alfred Hospital, Sydney.
“This perhaps, in part, explains why patient symptoms frequently remain under-treated, as treating physicians may be focused on symptoms as an indicator of disease activity or progression rather than as warranting treatment in their own right.”
However, the researchers noted the inter-relatedness of symptoms created clinical difficulties in patient management, providing the example of treating pain with opioids, which could exacerbate constipation or gastrointestinal dysmotilty.
“It is possible that palliative care may need to be delivered by a SSc-specialist palliative care team, with consideration given to the disease-specific requirements of patients, much in the way that rheumatology care is frequently delivered to SSc patients by subspecialty rheumatologists,” they said.
The researchers concluded: “Identification of those patients at higher risk of needing palliative care input, such as those with severe pulmonary and gastrointestinal disease complications, particularly as the disease course progresses, may assist in the appropriate targeting of palliative care interventions.”