Value of At-home Care Visits for Advanced Parkinson’s Focus of Trial

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A clinical trial in the U.S. is evaluating whether home visits from healthcare providers might improve the quality of life for people with advanced Parkinson’s disease and their caregivers.

The trial’s protocol was detailed in the paper, “Longitudinal, Interdisciplinary Home Visits Versus Usual Care for Homebound People With Advanced Parkinson Disease: Protocol for a Controlled Trial,” published in JMIR Research Protocols.

Many people with advanced Parkinson’s disease have difficulty getting around, limiting their ability to travel to a hospital or center for regular check-ups. As a result, problems in this patient group are more likely to go undetected for longer periods, placing a greater burden on them and their caregivers.

To counter this, interest is renewing in the utility of home visits — healthcare providers who go to the patient, rather than the other way around. Researchers at Rush University Medical Center in Illinois ran a clinical trial (NCT03189459) to assess whether home visits by healthcare providers could help with the life quality of people with advanced Parkinson’s.

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“To our knowledge, this is the first controlled trial to investigate the effects of interdisciplinary home visits among homebound individuals with advanced PD [Parkinson’s disease] and their caregivers,” the researchers wrote. “This study also establishes a unique cohort of patients from whom we can study the natural course of advanced PD, its treatments, and unmet needs.”

The trial, which has concluded, recruited 65 groups of patients and their caregivers being followed at the Rush center. Advanced disease was defined as stages 3 to 5 on the Hoehn and Yahr Scale of Parkinson’s progression (stage 3 marks moderate bilateral disease while a person at stage 5 is wheelchair dependent or bedridden).

For one year, participants were given home visits every three months by a nurse and research coordinator, accompanied on a first visit by a social worker. A number of evaluations, including standardized measures of life quality using the Parkinson’s Disease Questionnaire, were conducted. Guidance concerning medication use and other support, like making a home safety checklist to lower a fall risk and ensure that needed aids were in place, was also given.

A movement specialist, and later the social worker, then joined via telehealth (i.e., via a video call) to conduct a physical exam and evaluate symptom severity, among other examinations.

Caregivers were matched after a first visit with a “peer mentor,” a person who was a prior Parkinson’s caregiver and able to share their “knowledge, experience and time,” the report noted. Follow-up calls took place a month after each visit.

The study had no “placebo” group; all participants were given the same intervention. To make comparisons and evaluate the effect of the in-person visits on different measures, trial researchers are using data from similar patient and caregiver groups in a national registry.

“Given the ethical considerations of withholding care from those unable to access it and the high dropout rates seen in PD interventions with waitlist controls, a randomized controlled trial of interdisciplinary home visits is neither appropriate nor feasible,” the researchers wrote. “However, matched controls can provide a reasonable comparison group in this understudied population.”

The study started enrolling in mid-2018, and had enrolled all 65 patient-caregiver pairs by the end of 2019.

When the COVID-19 pandemic hit the U.S. a few months later, all in-person aspects of visits moved to be fully virtual using telehealth.

Findings from the study, which finished in June 2021, are now being analyzed and compared with data from the control group. Changes in patients’ health-related life quality, as measured by the questionnaire, is its primary goal, and an improvement in caregiver strain is among secondary goals. An exploratory analysis will also look at satisfaction with telehealth relative to at-home care visits. Results are expected to be published in the near future.

“Despite the challenges of reaching advanced homebound individuals with PD and their caregivers before and during the [COVID-19] pandemic, the potential impact of this and subsequent studies to aid in defining and ultimately addressing QoL [quality of life] and caregiver strain in this population is significant,” the researchers wrote.

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