The new research is aimed at a patient group often left out of research studies.
Investigators may soon have a better idea of whether interdisciplinary home-care visits can slow decline in patients with advanced Parkinson disease (PD).
A team of researchers, including Jori E. Fleischer, MD, MS, of Rush University Medical Center, has enrolled 65 patient-caregiver dyads in a 1-year study, during which patients received in-home and telemedicine visits. The goal of the research is to see how the interventions affect patient outcomes and also the strain on caregivers. Though the final data have yet to be published, a registered report has appeared in JMIR Research Protocols.
Fleischer and colleagues said the research is important because patients with advanced Parkinson’s disease are often homebound and suffer from other comorbidities.
“Consequently, care becomes fragmented or absent, increasing the likelihood of poor outcomes, including medication errors and other complications,” the authors wrote. “Caregivers bear the burden of meeting the needs of these complex and often severely disabled patients.”
When caregivers become overburdened, patients with PD often end up institutionalized, they noted.
The disease also comes with a heavy financial burden, they noted. A 2017 study found direct and indirect costs of caring for patients with Parkinson’s disease exceeded $51 billion in the United States.
The investigators previously conducted a pilot study of 27 patients with advanced Parkinson’s disease, each of whom received 4 at-home visits from medical providers over the course of a year. That study found that, while patients’ disease worsened significantly over the course of the year, the patients’ quality of life did not. Fleischer and colleagues said this suggests disease progression and quality-of-life decline are not inextricably linked.
In the new study, the authors hope to confirm the insights from the pilot study using a larger study population.
All of the patients enrolled in the study were between stages 3 and 5 according to the Hoehn and Yahr staging system. The patients received quarterly home visits from a nurse and a research coordinator, along with virtual visits by a movement disorder specialist and social worker.
The patients have been matched with patients with similar ages, sexes, and disease stages who are part of the longitudinal Parkinson’s Outcome Project registry.
As of the publication of the registered report, the authors said all visits in the study had been conducted and data analysis was underway. Investigators are hoping the study will help make clear how such visits can affect patient quality of life. Secondary outcomes include fall frequency, hospital visits, and changes in caregiver quality of life, among others.
The authors said this study is unique both in terms of the fact that it longitudinally will follow patients with advanced Parkinson’s disease and in the fact that it is comparing home-visit outcomes to that of usual care.
If the model of care in the study leads to meaningful improvement, the investigators said it could provide a new paradigm of treatment for this patient group.
“By standardizing the roles and responsibilities of each team member, including video telehealth, and incorporating templated documentation, this model may be leveraged to foster continuity of care, effective interdisciplinary case management, and improve [quality of life] and caregiver strain for countless homebound individuals with [Parkinson’s disease] and other neurodegenerative diseases,” they concluded.
Fleisher JE, Hess S, Sennott BJ, et al. Longitudinal, interdisciplinary home visits versus usual care for homebound people with advanced parkinson disease: protocol for a controlled trial. JMIR Res Protoc. 2021;10(9):e31690. Published online Sep 14. doi:10.2196/31690