Outpatient Palliative Care Improves Outcomes in Parkinson's and Related Disorders

By Will Boggs MD

February 13, 2020

NEW YORK (Reuters Health) - Outpatient palliative care improves quality of life and other outcomes in patients with Parkinson disease and related disorders (PDRD), according to findings from a randomized clinical trial. "This study builds on work by our group and others suggesting that if our goal is to maximize quality of life for persons living with PDRD and their families, then we must integrate a palliative approach," said Dr. Benzi M. Kluger of University of Rochester Medical Center, Rochester, New York.

"One of the most important things we learned in this study was the importance of being systematic, in our case using checklists, to ensure that we addressed the important needs, such as nonmotor symptoms, advance care planning, and care-partner support," he told Reuters Health by email.

Few studies have examined the effectiveness of palliative care in noncancer populations.

Dr. Kluger, who did the work while at Anschutz Medical Campus, University of Colorado, Denver, in Aurora, Colorado, and his colleagues compared the effectiveness of a multidisciplinary outpatient palliative-care program integrated with standard care versus that of standard care alone in 210 patients with PDRD and 175 caregivers.

Quality of life was measured by the Quality of Life in Alzheimer's Disease scale, which ranges from 13 (poor quality of life) to 52 (excellent quality of life). Scores improved in the palliative-care group by 0.66 point, but worsened in the standard-care group by 0.84 point at the end of six months (P=0.009), the researchers report in JAMA Neurology.

Significantly more patients in the palliative group (35%) than in the standard-care group (20%) experienced clinically significant improvements in quality of life, and fewer patients in the palliative (25%) than in the standard-care group (41%) experienced clinically significant worsening.

Patients receiving palliative care experienced reductions in caregiver burden compared with the standard care group, but these only became statistically significant at 12 months.

Patients in the palliative group also experienced clinically significant benefits in motor symptoms, but not in cognitive function.

"We were most surprised by the finding that the (motor scores) had both clinical and statistically significant improvement in the palliative care group," Dr. Kluger said. "Our qualitative work suggests that this may be because persons in the palliative group had conversations about not just goals of care but life goals. We think they were more engaged in their life and more likely to pursue other meaningful activities like spending time with family and travel."

Among individuals who did not have an advance directive at baseline, significantly more patients randomly assigned to palliative care had completed an advanced directive at 6 months (53% vs. 26%).

The two groups did not differ in healthcare use during the period, and there were no adverse events associated with palliative care.

"PDRD are not benign illnesses, and the needs of people living with these disorders go far beyond motor symptom management," Dr. Kluger said. "Palliative care provides a framework to address the multiple needs of this population from the time of diagnosis and is particularly beneficial when people reach more advanced stages of illness where our traditional care models have less to offer."

"I see this study as an important step in a wider movement to make palliative care a standard and expected part of care for persons living with neurodegenerative illness," he said. "There are many important next steps to optimize this care and to develop models to implement it in diverse settings and integrate it more widely in care. This includes bolstering palliative care in neurologist education."

Dr. Bastiaan R. Bloem of Radboud University Medical Center's Center of Expertise for Parkinson and Movement Disorders, in Nijmegen, the Netherlands, who co-authored a linked editorial, told Reuters Health by email, "This study really draws attention to the fact that palliative care also applies to a chronic and slowly progressive neurodegenerative condition like Parkinson's disease, and not just to more aggressive conditions like terminal cancer. It also shows that palliative care can be delivered successfully by an outpatient team, and not just within nursing homes or other institutions."

"The challenge in Parkinson's disease is to decide when the time is ripe to start palliative-care interventions," he said. "Clearly, screening for motor problems is not the right way to go, and the use of validated instruments to screen for true palliative-care needs - as was appropriately done in this study - is a much better way to move forward and identify good candidates for palliative care support."

Dr. Christopher Tarolli of the University of Rochester Medical Center, in Rochester, New York, who has researched various aspects of palliative care in Parkinson disease, told Reuters Health by email, "The pragmatic design of this study allowed flexibility with study procedures, better reflecting real-world practice. Additionally, the study sample was representative of a wide range of disease severity. This suggests better and broader translatability of these results to implementation in the clinical setting."

"The intervention was resource-intensive, and most patients are unlikely to have access to such care," said Dr. Tarolli, who was not involved in the study. "Ongoing work should aim to identify how a similar intervention could be implemented in lower-resource settings to broaden access to this beneficial care."

Dr. Usha Ramanathan of the University of Toronto, in Canada, who has written about access to palliative care for people with Parkinson disease, told Reuters Health by email, "This integrated approach should not be limited only to academic centers. Instead, this approach should be implemented in a variety of settings including community hospitals and long-term care facilities."

"We need to think about novel ways in which we can scale up integrated neuro-palliative care so that we can provide more care to more people rather than excellent care to a few people," said Dr. Ramanathan, who also was not involved in the study.

SOURCE: https://bit.ly/38lAuxl and https://bit.ly/37kbg0M JAMA Neurology, online February 10, 2020.