key: cord-0880304-g17dbm67 authors: Quinn, Lori; Macpherson, Chelsea; Long, Katrina; Shah, Hiral title: Promoting Physical Activity via Telehealth in People With Parkinson Disease: The Path Forward After the COVID-19 Pandemic? date: 2020-07-30 journal: Phys Ther DOI: 10.1093/ptj/pzaa128 sha: da1e9925e6fcc0bfbfa12c7a4cb567b712f6846d doc_id: 880304 cord_uid: g17dbm67 OBJECTIVE: There is mounting evidence in support of exercise and physical activity as a first-line approach to managing symptoms and potentially altering disease progression in people with Parkinson disease (PD). For many patients, a critical gap is the need for expert guidance to overcome barriers, set realistic goals, and provide personalized advice to optimize exercise uptake and adherence. The purpose of this case report is to describe a physical activity coaching program for individuals newly diagnosed with PD (Engage-PD) and to highlight rapid modifications made to this program in response to the COVID-19 pandemic. METHODS (CASE DESCRIPTION): Engage-PD is a single cohort implementation study of a coaching intervention grounded in self-determination theory being conducted at Columbia University Parkinson’s Foundation Center of Excellence in New York City, the early epicenter of the COVID-19 pandemic in the United States. The project was uniquely positioned to be adapted to telehealth delivery and to address an immediate need for support and guidance in the home environment, including people with early-mid stage PD. Participants completed baseline and follow up (3 months) assessments, and participated in up to four coaching sessions all delivered via telehealth platform. The intervention incorporated 1: 1 coaching, goal-setting, physical activity monitoring, and use of a disease-specific workbook to promote and support safe exercise uptake. RESULTS: While the program is ongoing, 52 referrals were reicieved and 27 individuals enrolled with PD in the first 2 months of the pandemic for a recruitment rate of 52%. Although direct comparisons with pre-coronavirus recruitment are difficult due to the recency of the Engage-PD implementation study, this recruitment rate was larger than expected, which may have been due to several factors (eg, most patients had limited, if any, access to in-person programs and therapy services during this time, so the Engage program filled an immediate need to provide exercise and activity guidance). There was a wide range of scores for both baseline physical activity and self-efficacy measures. CONCLUSION: Remotely-delivered interventions may serve as a sustainable platform for physical activity coaching programs for people with PD as well as other neurodegenerative diseases. IMPACT: With the uncertainty brought about by the current pandemic, this case report highlights the opportunity to shift the current model of care for individuals with neurodegenerative diseases such as PD. The benefits of exercise for people with Parkinson disease (PwPD) are well known, with a wealth of community-based interventions offered for the over 1 million individuals living with Parkinson Disease (PD) in the U.S. 1 Community-based programs provide PwPD invaluable access to low-cost programs and are an essential complementary treatment to individualized physical therapy that may be limited by geographical constraints, service restrictions, or insurance stipulations. Importantly, physical therapists should play a role in facilitating exercise uptake in the community, and therapist-delivered coaching programs to promote PwPD to engage in exercise, particularly soon after diagnosis, are lacking. 2 In particular, there is a need for interventions that facilitate enhanced self-efficacy for physical activity engagement, 2,3 while specifically addressing barriers and facilitators unique to each individual. 4, 5 There is also growing evidence in support of the neuroprotective benefits of aerobic exercise in individuals with neurologic diseases and disorders. [6] [7] [8] [9] However, PwPD have specific barriers to exercise uptake, including disease-specific balance and gait impairments, apathy and depression that may result in a greater likelihood of sedentary behavior. 5, 10 In addition to high levels of sedentary behavior, PwPD are frequently referred to rehabilitation services once the onset of disability occurs, wherein progressive mobility, activities of daily living, and cognitive declines can lead to a rapid deterioration in functional status, increased risk for falls, and subsequent rates of higher healthcare utilization. 11 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. for individuals with PD. 16 This program provides individuals with the tools needed for secondary prevention of physical activity decline throughout their disease course, with particular emphasis on individuals newly diagnosed and in the early disease stages. The Figure illustrates the Engage-PD logic model, including inputs (coaching sessions, disease-specific workbook and educational components, and physical activity monitoring) and outputs (assessments and impact). Prior to the pandemic restrictions, neurologists referred study candidates during clinic hours at Columbia University Irving Medical Center, so they could readily participate in the Engage-PD program on the same day as neurology appointments within our multi-disciplinary center. Participants were screened for readiness to engage in exercise using the Physical Activity Readiness Questionnaire (PAR-Q). 17 Baseline measures included the Timed Up and Go (TUG), 10m walk test (10mWT), 30 second chair stand test (30sCST), Brunel Lifestyle Physical Activity Questionnaire, 18 and the Norman Self-Efficacy Scale. 19 Participants received one in-person and one remotely-delivered coaching session, followed by a follow-up remote assessment at three months. The Engage-PD intervention is grounded in self-determination theory, 20 promoting individual autonomy, competence and relatedness. Engage-PD is designed to address barriers to exercise engagement and support adherence to individualized exercise plans that are both purposeful and meaningful to patients. The program specifically targets those individuals who are not currently engaged in sufficiently intense or frequent levels of exercise, empowering them early in the disease process with adequate knowledge and self-management techniques through a coaching program. By using a behavior-change model, Engage-PD promotes self-efficacy and regulation of motivation for exercise, thereby facilitating long-term sustainability in each participant. 21 A disease-specific workbook, which was developed after piloting in a previous study, 16 includes evidence-based exercise recommendations including frequency, intensity, and duration for aerobic, strengthening/resistance, flexibility and neuromotor exercises. 22, 23 This includes recommendations to incorporate high intensity aerobic exercise a minimum of three times per week, however this advice is individually tailored based on current fittnes level and functional ability. As the Engage-PD program is a behavior change coaching program, intervention sessions are more self-directed (or self-determined) than prescriptive, and therapists work to develop participant relatedness in feeling connected. 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, using a modified version of the Canadian Occupational Performance Measure (COPM), based on current activity levels and functional ability with particular concern for safety. The workbook also provides education on physical activity monitoring to support autonomy, which participants can do using wearable activity monitors, smartphones, or exercise diaries. In response to stay-at-home guidelines, the Engage-PD program rapidly transitioned to a telehealth platform within two weeks of state enforcement of restrictions on non-essential medical visits in New York. With regard to inclusion criteria, we modified our program to include individuals with mid-stage PD (Hoehn and Yahr stage III in addition to previously targeted stages I-II). This change was made in response to the increased demand for exercise and activity guidance by our patients, many of whom were struggling to restructure their exercise routine to be conducted completely at home. All sessions were moved to telehealth platform using Zoom Video Communications , Inc. (San Jose, CA). The structure of assessments was also modified to exclude the TUG, 30sCST, and 10mWT. While these assessments could likely be completed by participants with instructions via Zoom, we were concerned about participant safety and reliability of the data. We weighed the risk/benefit ratio of this in our decision to eliminate these measures for the short-term. All other assessments were adapted for video interview. The structure of the intervention sessions did not markedly change when implemented via telehealth, however we made some adaptations to address the current stay-at-home environment. As a coaching intervention, the Engage PD program consists mostly Although telehealth programs have been used in rehabilitation for many years, there has been inconsistent uptake of such programs across the healthcare continuum. Since the onset of the coronavirus pandemic, such programs have surged to the forefront of healthcare delivery, with considerable state and federal efforts to change reimbursement policies. Furthermore, the American Physical Therapy Association (APTA) 24 and other organizations have provided important guidance and structure for remote delivery of physical therapy services, as well as reimbursement issues to ensure appropriate infrastructure is in place to support ongoing service delivery. Essential to this conversation is the structure of these programs, including physical activity coaching. Physical activity coaching should be a standard component of physical therapy intervention and is one that is highly amenable to remote delivery. Most clinical studies that have investigated engagement of exercise in people with PwPD have been conducted in ambulatory settings, under tightly controlled conditions, and with use of direct supervision of trained healthcare personnel. 25 These studies and the subsequent evolution of applied health programs invoke many logistical barriers (cost, transportation, accessibility), which ultimately affect the reach, efficacy, and feasibility of targeted practice. 26 With advances in both technology and healthcare, telehealth platforms are becoming more prevalent as an effective tool to deliver timely healthcare service. Compared with face-to face delivery, interventions delivered via telehealth may increase accessibility of self-management interventions by addressing major barriers that may negatively affect patients' participation, including cost, mobility restrictions or service availability in remote rural areas. 27 Telehealth interventions have produced positive clinical outcomes in a variety of chronic conditions. 28 The implementation of telehealth to service PwPD is certainly evolving, although remains in its infancy. A case-report detailing a telehealth program for an individual with PD showed positive clinical health-related outcomes including functional mobility, 29 and furthermore, an investigation into a peer coaching program that included both in-person and telehealth platforms was deemed feasible, safe, and acceptable for use in PwPD. 25 In order to sustain exercise and physical activity for long term benefits, it is imperative that individuals are empowered through education and the development of self-management skills. To be successful, many individuals require support to develop necessary competencies such as problem-solving, decision-making, resource utilization, goal setting and action planning. 31 These skills, along with the support of a physical or occupational therapist, help to foster the formation of health-promoting habits and routines in their daily lives. Evidence suggests that self-management programs may yield better health outcomes and longer uptake of exercise and physical activity in people with chronic diseases 32 and neurological diseases 33 compared to non-self-management programs. 34 Importantly, such self-management programs, which are largely focused on 1:1 discussions, may be highly amenable to telehealth delivery. While delivery of the Engage program via telehealth is relatively new, analysis of the feasibility of implementation is essential to inform future modifications. While recruitment rates were initally high, we had a low racial and educational diversity in our early referrals. A critical gap in provision of services for PwPD 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, and Hispanic and African American PwPD are less likely to access rehabilitation services compared to Caucasians. 35 For many PwPD there is a need for expert guidance to overcome barriers, set realistic goals, and provide personalized advice adapted to their culture and in their native language to optimize exercise uptake and adherence. Importantly, a multi-faceted approach is needed to address individualized needs and 13 consider linguistic and cultural differences in diverse communities found in New York City. Moving forward, we plan to implement specific efforts for a more diverse representative sample and to consider cultural adapations to the program. Furthermore, there may be barriers to telehealth services more generally, including internet access and digital competencies, that would require systematic efforts to address. With the uncertainty brought about by the current pandemic, it is advantageous to alter the current model of care. Emphasis on early stage management, self-management and coaching interventions 9 that can be readily implemented via telehealth are essential. 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. Such models would not replace short intensive episodes of care as needed, but would rather provide a more comprehensive model that emphasize a patient-centered approach to managing a complex, lifelong disease such as PD. 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