A new study comparing the addition of outpatient palliative care to standard care alone for patients with Parkinson’s disease and related disorders found that the additional care brought benefits to the patients without adding to caregiver burden.
This is significant because the level of care required for many with advanced Parkinson’s disease is considerable. Even when the standard of care is met, the patients may still struggle – and the burden on caregivers only grows.
Parkinson’s disease affects 1 to 2 percent of the population over 65. In addition to motor dysfunction, patients also suffer from non-motor symptoms such as pain, dementia leading to poor quality of life, and high nursing home placement.
Palliative care, once belonging primarily to the realm of oncology, has become an important tool in managing these difficult symptoms and issues. But until now, no systematic evidence has been collected about its efficacy.
This study, published February 10 in JAMA Neurology, was a randomized clinical trial of 210 patients with Parkinson’s disease and related disorders (PDRD) and 175 caregivers. Patients who had high to moderate palliative care needs were enrolled. They were excluded if they had urgent needs, were already receiving palliative care for PDRD, had another diagnosis that merited palliative care, or were unable to follow the study protocol. They were randomized to standard care or palliative care plus standard care.
The palliative care intervention was conducted by a multidisciplinary team made up of a neurologist with informal palliative care training, a nurse, a social worker, a chaplain experienced in working with Parkinson’s patients, and a board-certified palliative medicine physician.
Patients had palliative care visits every three months, either in person or via telemedicine. The team could add supplemental phone calls to care as needed. Summaries of the visits were provided to the patient, and primary care physicians and neurologists received standard clinic notes.
At the end of six months, researchers found “that persons randomized to receive integrated [palliative care] had better [quality of life], improved symptom burden, and higher rates and quality of advance directive completion.”
In addition, “global symptom burden” improved in the palliative care intervention group, a factor attributed to systematically using checklists to detect non-motor symptoms. Further benefits to motor symptoms were significant – and that was an unexpected outcome since it wasn’t the focus of the intervention.
There also appears to have been benefits for caregivers, although it was not significant until the 12-month follow-up. These benefits included decreased anxiety and burden.
The study was resource-intensive and carried out in three academic settings. This model should stand as a starting point for adapting intervention methods in non-academic settings and with a diverse population. The interventions had a significant impact on outcomes, however, so those providing healthcare for patients with PDRD in all settings should consider how this approach can be modified to benefit their patients.