People with Parkinson’s disease or related disorders (PDRD) as well as their caregivers benefited from better quality of life and other outcomes when outpatient palliative care was integrated into their care, research* published in JAMA Neurology has found. The authors of the study said their findings support efforts to integrate palliative care into PDRD care, but called for further research to find out how best to deliver it, and to whom.
They enrolled 210 men and women (mean age 70.1 years) with PDRD and moderate palliative care needs, and 175 caregivers (mean age 66.1 years), into the study, allocated them to either standard care alone (provided by a neurologist and a primary care practitioner) or standard care plus outpatient integrated care (administered by a neurologist, social worker, chaplain, and nurse using palliative care checklists, with guidance and selective involvement from a palliative medicine specialist). They then followed them for a year, and compared patient and caregiver outcomes between the two groups at six months – primary outcomes were patient quality of life (QoL; measured by the Quality of Life in Alzheimer Disease scale) and caregiver burden (measured by the Zarit Burden Interview). Patients and caregivers both had better outcomes when palliative care was integrated into their care
They reported that at six months’ follow up, compared with participants receiving standard care alone, those receiving the palliative care intervention had significantly better QoL (mean 0.66 improvement vs. 0.84 worsening; treatment effect estimate, 1.87), but they saw no statistically significant difference in caregiver burden (mean 2.3 improvement vs. 1.2 improvement in the standard care group). There were also other significant differences favouring the palliative care intervention including nonmotor symptom burden, motor symptom severity, completion of advance directives, caregiver anxiety, and caregiver burden at 12 months; no outcomes favoured standard care alone. The researchers’ secondary analyses suggested that benefits were greater for persons with higher palliative care needs.
They concluded: “This study supports efforts to integrate palliative care into PDRD care… The integration of palliative care into PDRD care holds the potential to improve outcomes, particularly for persons who are underserved by current models of care (e.g., patients with advanced illness and dementia). As a new application of palliative care, a need exists to optimise the intervention, particularly for caregivers, and to develop models appropriate for implementation in non-academic settings and among diverse populations.”
Given that palliative care is both time- and resource-intensive, they called for further research to “optimise triage tools and consider alternative models of care delivery, such as telemedicine or care navigators, to provide key aspects of the intervention at lower cost”.
*Kluger BM, Miyasaki J, Katz M, et al. Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders: a randomized clinical trial. JAMA Neurol. Published online February 10, 2020. doi:10.1001/jamaneurol.2019.4992