Remote coaching via telehealth could help people with Parkinson’s disease stay physically active, even when in-person events aren’t feasible, a study suggests.
Exercise and physical activity have established health benefits for people with Parkinson’s disease. But structured programs that include regular coaching can be necessary to overcome the barriers to exercise this disease brings, from problems with gait and balance to depression that saps motivation.
“Early referral and implementation of exercise and coaching programs are needed so that individuals may capitalize on the benefits throughout the course of their disease,” the researchers wrote.
A team at Columbia University designed and implemented a coaching program called Engage-PD. Modeled after a similar program for Huntington’s disease, the program combines one-on-one coaching sessions with disease-specific resources, including a workbook.
Its aim is not to establish a regimented workout routine, but rather to give participants the tools to figure out what level of activity works for them, and to foster the self-determination to do so.
“Participants are free to choose which exercises and activities they engage in, however specific instruction on exercises are provided as appropriate. Therapists work individually with participants to set goals … based on current activity levels and functional ability with particular concern for safety,” the researchers wrote.
Engage-PD was designed to include both in-person and virtual check-ins. However, in response to the COVID-19 pandemic and subsequent lockdown across New York, the program was modified to be fully telehealth — that is, completely remote.
Between March 25 and May 27, 52 people were referred to the program, and 27 (52%) enrolled. Their average age was 66.5; 22 participants identified as white, one as Asian, and one as Hispanic.
Recruitment was higher than expected, possibly due to the pandemic, the researchers suggested.
“Most patients had limited, if any, access to in-person programs and therapy services during this time, and the Engage program filled an immediate need to provide exercise and activity guidance,” they wrote. “The Engage program specifically aims to facilitate exercise uptake in the home or community environment, which perfectly aligned with stay-at-home guidelines.”
Engage PD, which initially intended to serve newly diagnosed patients, was also modified “to include individuals with mid-stage PD (Hoehn and Yahr stage III in addition to previously targeted stages I-II).”
Patients took part in the program with reasonable ease. All had access to a smartphone, tablet or computer, and were able to connect using Zoom “within the first session,” the researchers wrote.
Engage-PD shows proof-of-concept for a remote system to help people with Parkinson’s stay physically active. Further, its relatively high recruitment rate indicates interest in such programs. The researchers acknowledged, however, that greater efforts were needed to make telehealth programs accessible to people of all backgrounds.
“While recruitment rates were initially high, we had a low racial and educational diversity in our early referrals,” they wrote. “A critical gap in provision of services for PwPD [people with Parkinson’s disease] is toward the Hispanic/Latinx and African American/Black communities and to develop targeted strategies for recruitment and inclusion of these groups in telehealth programs. Individuals in these communities may have limited access to disease-specific exercise and physical activity advice.”
Telehealth exercise platforms like Engage-PD, they suggested, may also be useful in wider contexts after the pandemic.
“As social distancing restrictions begin to ease, PwPD may choose to stay at home rather than risk exposing themselves to infection. This may be the opportune time to begin more widespread implementation of telehealth programs for physical activity coaching in PwPD,” the researchers wrote.
“Changing models of care, whereby individuals with neurodegenerative diseases such as PD can be monitored periodically over an extended period, can potentially improve cost effectiveness of rehabilitation services as well as outcomes for disease management,” they added.
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