Patients with Parkinson’s disease experienced improved quality of life and reduced symptoms when they received outpatient palliative care provided by a team of providers vs. standard care from a single provider, according to the results of a randomized clinical trial published in JAMA Neurology.
In the study, Benzi M. Kluger, MD, chief and founder of the palliative care section at the University of Colorado, and colleagues randomly assigned patients with Parkinson’s disease to one of two cohorts.
In the first cohort, 104 patients (mean age, 70.7 years; 70 men; 93 white) received standard care by a primary care physician and/or a neurologist. In the second cohort, 106 patients (mean age, 69.5 years; 65 men; 100 white) participated in an outpatient palliative care intervention — either in person or via telehealth. The intervention added a trained palliative neurologist, nurse, social worker, chaplain and a board-certified palliative medicine physician to the treatment plan. These professionals and the patient met for about 2 to 2.5 hours to discuss nonmotor symptoms of Parkinson’s disease, symptom management, goals of care, anticipatory guidance, difficult emotions and caregiver support. Patients in the intervention group also received after-visit summaries and their PCP and neurologist received clinic notes and care suggestions.
At 6 months, compared with patients who received standard care, patients in the palliative care intervention group had better quality of life, with a mean improvement of 0.66 on the Quality of Life in Alzheimer Disease scale vs. a mean worsening of symptoms of 0.84 (treatment effect estimate = 1.87; 95% CI, 0.47-3.27).
“We hypothesize that this improvement reflected our systematic approach to the detection of nonmotor symptoms using checklists, as nonmotor symptoms are not frequently mentioned by patients or detected by neurologists,” the researchers wrote.
At 12 months, trial endpoints such as the completion of advance directives, motor symptom severity, nonmotor symptom burden, caregiver burden and caregiver anxiety significantly favored the intervention cohort, researchers said.
Kluger and colleagues encouraged future researchers to find ways to reduce the time and cost needed to implement their intervention.
In a related editorial, Bastiaan R. Bloem, MD, PhD, FRCPE, of the Center of Expertise for Parkinson & Movement Disorders in the Netherlands, and colleagues said study was “timely and practical.”
“It turns the call for palliative care into practice by introducing a dedicated and multidisciplinary palliative care team that operates on an outpatient basis,” they wrote. “The study is also noteworthy for being the largest published clinical trial to date that assesses the utility of palliative care for people with parkinsonism. Another laudable element was that 30% of participants had a clinical diagnosis of dementia, for whom palliative care may be particularly appropriate.” – by Janel Miller
Bloem BR, et al. JAMA Neurol. 2020;doi:10.1001/jamaneurol.2019.4697.
Kluger BM, et al. JAMA Neurol. 2020;doi:10.1001/jamaneurol.2019.4992.
Willis AW, et al. Neurology. 2011;doi:10.1212/WNL.0b013e31822c9123.
Bloem reports being part of a collaborative project financed by the Ministry of Economic Affairs and Climate Policy in the Netherlands by means of the public-private partnerships allowance made available by Top Sector Life Sciences & Health to stimulate public-private partnerships. Kluger reports receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study. Please see the study and editorial for all other authors’ relevant financial disclosures.