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Outpatient Palliative Care Model Shows Potential for Parkinson Disease and Related Disorders

This novel trial’s positive outcome suggests that a multidisciplinary outpatient model is possible to integrate into care beyond just those who are most vulnerable in institutional care.

Benzi M. Kluger, MD, MS

New study results suggest that outpatient palliative care is beneficial for patients with Parkinson disease and related disorders (PDRD) in comparison with treatment with standard care practices alone.1

The trial (NCT02533921), which included 210 patients and 175 caregivers, was conducted by Benzi M. Kluger, MD, MS, professor of neurology, University of Colorado School of Medicine, and colleagues. In comparison with those receiving standard care, the patients in the palliative care intervention group had better quality of life, as measured by the Quality of Life in Alzheimer Disease scale scores, with an improvement of 0.66 point (standard deviation [SD], 5.5) improvement compared to a 0.84-point (SD, 4.2) worsening (treatment effect estimate, 1.87; 95% CI, 0.47—3.27; P = .009).

Additionally, there was no significant difference in caregiver burden, with the intervention group improving by a mean 2.3 points (SD, 5.0) and a 1.2-point (SD, 5.6) improvement in the standard care group (treatment effect estimate, −1.62; 95% CI, −3.32 to 0.09; P = .06).

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“This study supports efforts to integrate palliative care into PDRD care,” Kluger and colleagues wrote. “The lack of diversity and implementation of palliative care at experienced centers suggests a need for implementation research in other populations and care settings.”

In an accompanying editorial by Bastiaan R. Bloem, MD, PhD, et al., this work was met with praise, calling palliative care “the next frontier in the ongoing quest to build optimal multidisciplinary care models” for Parkinson, and noting the study will provide an agenda for future research.2

“To better understand the most effective components of a complex intervention such as palliative care, new studies should include a systematically designed process evaluation. A further challenge relates to the specific composition of the palliative intervention,” Bloem et al. wrote.

In their trial, Kluger and colleagues assessed the outpatient integrated palliative care intervention (n = 106), conducted by a combination of a neurologist, social worker, chaplain, and nurse. It involved palliative care checklists supplemented by guidance and selective involvement from a palliative medicine specialist. For the control group (n = 104), a neurologist and a primary care practitioner provided standard care practices. The primary outcomes were the differences in patient quality of life and caregiver burden, the latter assessed by the Zarit Burden Interview.

As expected, at baseline, higher palliative care needs—assessed by the Palliative Care Needs Assessment Tool (PC-NAT)—were associated with a greater benefit from the intervention. Additionally, after 1 year, women the treatment effect for women was 2.91 (95% CI, 0.67—5.14; P = .01) compared to 0.47 for men (95% CI, −1.22 to 2.16; P = .58), indicating a 2.43 (95% CI, −0.36 to 5.23; P = .09) greater treatment effect.

There was a higher proportion of persons achieving a clinically significant benefit in the palliative care intervention group (35%) compared to the standard care group (20%), defined as a change of ≥3 points on the Quality of Life in Alzheimer Disease scale (P = .02). As well, there was a lower proportion of persons who worsened clinically in the intervention group (25%) compared to the standard care group (41%), which was significant (P = .02).

Kluger and colleagues detailed that a number of aspects of this work merit mentioning, including the basis of inclusion criteria on a broad range of potential patient and caregiver needs rather than prognoses or definitions, and the delivery of the intervention in an integrated model that reflects current practice. They noted that the issues considered for inclusion “are common reasons for referral to our clinics” and that the care model “highlights a need to develop hybrid models of palliative care that build on the strengths of both disease and palliative care specialists.”

Bloem et al. wrote that the trial’s positive outcome is indicative of the potential for success with such a model, with emphasis on the extension of care beyond just those in institutional care, though they did note that “it remains unknown whether the specific approach used by Kluger and colleagues is the most effective palliative care model.”


1. 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.

2. Bloem BR, Darweesh SKL, Meinders MJ. Palliative Programs for Persons With Parkinsonism—The Next Frontier. JAMA Neurol. Published online February 10, 2020. doi: 10.1001/jamaneurol.2019.4697.