New Australian data tells us which patients might benefit.
Almost three-quarters of systemic sclerosis patients could benefit from specialist palliative care, according to Australian research.
The first-of-a-kind study, published in Arthritis Care & Research, set out to examine and quantify the need for palliative care to address high symptom burden as an integrated part of systemic sclerosis management.
“I suspect it is not widely known that palliative care is appropriate for people with chronic illnesses before the onset of the end-of-life stage,” co-author Professor Susanna Proudman told Rheumatology Republic.
“Rheumatologists understand that some patients with chronic conditions including rheumatic diseases have reduced life expectancy, but like most specialities, they may fail to recognise the need for and role of palliative care in their patients until end of life is imminent.”
In observing that SSc remained an incurable disease associated with a reduced health-related quality of life, the study authors suggested that patients have a lot to gain from palliative care that targeted symptoms that caused considerable distress to the patient, rather than focusing primarily on disease activity.
“Almost 75% of SSc patients may benefit from specialist palliative care input to manage specific severe symptoms, and the overlapping nature of such symptoms highlights the complex symptom management needs of SSc patients,” the authors wrote.
“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 included 875 patients from the Australian Scleroderma Cohort Study. The median age of onset was 47 years and median follow-up was 7 years, with a median of 7 study visits. Almost a quarter (23%) had diffuse cutaneous SSC, and almost 11% died during follow up.
The researchers defined the need for specialist palliative care as having severe burden from at least one symptom present for at least two consecutive study visits, or at ≥50% of a participant’s total number of study visits. Among patients who died, those who had severe symptom burden in the visit prior to death were considered to have specialist palliative care needs.
Around 73% of the study group met these criteria for having specialist palliative care needs.
Factors associated with higher need for palliative care were older age, longer disease duration at recruitment, poorer quality of life, poorer function and higher mortality during follow-up.
In terms of symptoms, significant pulmonary involvement, myositis, digital ulcers, and both upper and lower gastrointestinal involvement were all independently associated with the need for specialist palliative care.
Over the last decade, relief of suffering through specialised palliative care has become recognised as having a role beyond the type of care that is provided to people with cancer or terminal illness, such as chronic cardiopulmonary disease and neurological conditions.
“The aim of palliative care is to focus on improving quality of life by reducing the burden of multisystemic symptoms. This may require therapy that is broader than SSc-specific therapies, for example, treating the consequences of symptoms such as anxiety,” Professor Proudman told RR.
However, as the authors pointed out, there was no framework or guidelines for palliative care currently in place for rheumatology patients.
“But the first step to addressing this unmet need is to recognise it in the patient cohort generally and your patient specifically,” said Professor Proudman.
The potential for specialist palliative care also extends to other areas of rheumatology, she said.
“Any rheumatic disease that causes interstitial lung disease or pulmonary arterial hypertension, including rheumatoid arthritis, mixed connective tissue disease, idiopathic inflammatory myopathy and SLE, has the potential to directly reduce survival and it behoves rheumatologists to recognise the approach of end of life in the months before it arrives,” said Professor Proudman.
“This can then trigger conversations with patients to help them prepare, preparation of an Advanced Care Directive and referral to palliative care if symptom management is challenging.”
