Palliative Care Improves Quality of Life, Symptom Burden of Patients With Parkinson Disease


Compared with standard care, patients with Parkinson disease and related disorders who received palliative care exhibited improved quality of life and better symptom burden at 6 months after intervention, according to study findings.

Compared with standard care, patients with Parkinson disease and related disorders (PDRD) who received palliative care (PC) exhibited improved quality of life (QOL) and better symptom burden at 6 months after intervention, according to study findings published yesterday in JAMA Neurology.

PC, a field of care that aims to improve QOL and reduce suffering in those with serious illnesses, has expanded from its initial roots in hospice care and cancer to include earlier deployment, delivery to noncancer populations, and delivery in outpatient settings. The field’s approach on care focuses on addressing medical symptoms, psychosocial issues, and advance-care planning. Although PC has generated growing interest from high projected needs, such as neurodegenerative illnesses, few studies have examined the efficacy of this model, noted the study authors.

Currently, Parkinson disease (PD) is the 14th leading cause of death in the United States, affecting 1% to 2% of people older than 65 years. In addition to motor symptoms, PD contributes to nonmotor symptoms, such as pain and dementia. These factors, collectively termed PDRD, are commonly associated with mortality, QOL, nursing home placement, and caregiver distress. To combat symptoms related with PDRD, a growing number of centers have initiated outpatient PC services.

Previous studies examining an integrated PC model within PDRD care has exhibited efficacy and feasibility, causing researchers to examine how the impact of an outpatient integrated PC compared with standard care alone for both patients with PDRD and caregivers.

The study authors evaluated 210 patients with PDRD (135 men; mean [SD] age, 70.1 [8.2] years) enrolled at 3 academic tertiary care centers between November 1, 2015, and September 30, 2017 for 1 year and 175 caregivers (128 women [73.1%]; mean [SD] age, 66.1 [11.1] years). Of the studied participants, 91.9% (n = 193) were white and non-Hispanic, and each individual was assigned to either standard care or PC at a 1:1 ratio.

Primary outcomes of the study included differences in patient QOL, measured by the Quality of Life in Alzheimer Disease scale, and caregiver burden, measured by the Zarit Burden Interview, between the PC intervention and standard care groups at 6 months.

In the comparative analysis, results exhibited the benefit of PC compared with standard care on the primary outcome of QOL (mean [SD], 0.66 [5.5] improvement vs 0.84 [4.2] worsening; treatment effect estimate, 1.87; 95% CI, 0.47-3.27; P = .009), with additional improvements seen in nonmotor symptom burden, motor symptom severity, completion of advance directives, and caregiver anxiety at 6 months. At 12 months, however, the QOL measures were not significantly different between the 2 groups.

While the PC group showed a statistically significant reduction in caregiver burden (−2.28 points; 95% CI, −3.38 to −1.18; P <.001) compared with the standard group (−1.08 points; 95% CI, −2.28 to 0.12; P = .08) at 6 months, this difference was not statistically significant in the primary analysis (mean [SD], 2.3 [5.0] improvement in the PC intervention group vs 1.2 [5.6] improvement in the standard care group; treatment effect estimate, −1.62; 95% CI, −3.32 to 0.09; P = .06). However, the difference was significant at 12 months (treatment effect estimate, −2.60; 95% CI, −4.58 to −0.61; P = .01).

Additionally, patients who required higher PC needs, assessed by the Palliative Care Needs Assessment Tool, were shown to exhibit a greater benefit from the intervention.

Lead study author Benzi Kluger, MD, neurologist at the University of Colorado in Denver, discussed the importance of the study in approaching care for patients with PDRD based on needs, not prognosis. “This makes it easier to identify who needs palliative care by allowing us to use screening tools around symptoms and other issues like caregiver distress, rather than trying to predict how much time someone has left,” he said. "This study tells us that palliative care can be helpful for persons with neurodegenerative illnesses and that it may be beneficial to deliver palliative care earlier in the course of these illnesses than traditionally done with hospice."

The study authors note that increased research is warranted due to the study’s lack of diversity and implementation of PC at experienced centers.


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 [published online February 10, 2020]. JAMA Neurol. doi: 10.1001/jamaneurol.2019.4992.

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