An intervention that provides palliative care training to community neurologists and specialized palliative care services to people with Parkinson’s disease (PD) via telehealth modestly improved patients’ quality of life (QOL) and increased completion rates for advance directives, new research suggests.
The study included 359 patients (mean age 74 years) with probable PD or a related diagnosis and moderate to high palliative care needs from 19 community neurology practices, 300 caregivers, and 34 clinicians in community practices randomly assigned to start the intervention every 6 months in four time periods.
Patients received usual care or the intervention, which provided palliative care education and coaching to clinicians and access to telemedicine consultations to patients and families, depending on when their neurologist started the intervention.
Primary outcomes were differences at 6 months between usual care and intervention in change in patient QOL measured using the Quality of Life in Alzheimer Disease Scale (QOL-AD) and caregiver burden measured using the Zarit Burden Interview (ZBI).
Clinicians completed surveys on palliative care knowledge and attitudes, and satisfaction with the educational course and related resources, before starting the intervention, immediately after training, and at 6 and 12 months post-intervention.
Compared with standard care at 6 months, participants receiving palliative care had better QOL (treatment effect estimate, 0.97; P = .03).
There was no significant between-group difference in change in caregiver burden at 6 months.
Among participants who did not have advance directives at baseline, those receiving palliative care were significantly more likely to have completed advance directives at 6 months (50% vs 19%; P = .008) and a healthcare proxy (50% vs 27%; P = .02).
Percentage correct on clinician knowledge tests significantly increased from 55.5% pre-training to 66.5% post-training (P < .001), although some evidence suggested the improvement wore off by 6 months after training.
Although “the results suggest the potential for integrated palliative care interventions to improve outcomes for persons receiving care in community settings,” outcomes may have been better if visits with trained community neurologists were more frequent and clinicians had more time and practice to get used to new skills, the authors write.
The study was conducted by Benzi M. Kluger, MD, department of neurology, University of Rochester Medical Center, New York, and colleagues. It was published online November 13 in JAMA Neurology.
As the study had a pragmatic, stepped-wedge design, external temporal trends, including the COVID-19 pandemic that began during study recruitment, could have affected results. The study could not control how clinicians incorporated or failed to incorporate palliative care skills into their practice. Few participants from rural areas and minorities were included, and patients and practices participating in the study may not reflect general care.
The study received funding from the National Institute of Nursing Research. Kluger has reported receiving grants from the Patient-Centered Outcomes Research Institute, National Institute on Aging, and National Institute of Nursing Research; personal fees from Elsevier, American Academy of Neurology, Parkinson’s Foundation, International Parkinson and Movement Disorders Society, and Davis Phinney Foundation; and nonfinancial support from the International Neuropalliative Care Society outside the submitted work. Disclosures for the other authors are listed with the article.
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