Highlights
- Feasibility of a self-directed upper extremity training program to promote actual arm use for individuals living in the community with chronic stroke
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- •Distinct from clinic-based rehabilitation, self-directed rehabilitation approaches must address unique challenges related to decreased client motivation and adherence.
- •Shared decision making and behavior change frameworks can support the implementation of UE self-directed rehabilitation.
- •The Use My Arm-Remote program was feasible and safe to implement for individuals living in the community with chronic stroke.
Abstract
Objective
To determine the feasibility of a self-directed training protocol to promote actual arm use in everyday life. The secondary aim was to explore the initial efficacy on upper extremity (UE) outcome measures.
Design
Feasibility study using multiple methods.
Setting
Home and outpatient research lab.
Participants
Fifteen adults (6 women, 9 men, mean age=53.08 years) with chronic stroke living in the community. There was wide range of UE functional levels, ranging from dependent stabilizer (limited function) to functional assist (high function).
Intervention
Use My Arm-Remote protocol. Phase 1 consisted of clinician training on motivational interviewing (MI). Phase 2 consisted of MI sessions with participants to determine participant generated goals, training activities, and training schedules. Phase 3 consisted of UE task-oriented training (60 minutes/day, 5 days/week, for 4 weeks). Participants received daily surveys through an app to monitor arm training behavior and weekly virtual check-ins with clinicians to problem-solve challenges and adjust treatment plans.
Outcome Measures
Primary outcome measures were feasibility domains after intervention, measured by quantitative study data and qualitative semi-structured interviews. Secondary outcomes included the Canadian Occupational Performance Measure (COPM), Motor Activity Log (MAL), Fugl-Meyer Assessment (FMA), and accelerometry-based duration of use metric measured at baseline, discharge, and 4-week follow-up.
Results
The UMA-R was feasible in the following domains: recruitment rate, retention rate, intervention acceptance, intervention delivery, adherence frequency, and safety. Adherence to duration of daily practice did not meet our criteria. Improvements in UE outcomes were achieved at discharge and maintained at follow-up as measured by COPM-Performance subscale (F[1.42, 19.83]=17.72, P<.001) and COPM-Satisfaction subscale (F[2, 28]=14.73, P<.001), MAL (F[1.31, 18.30]=12.05, P<.01) and the FMA (F[2, 28]=16.62, P<.001).
Conclusion
The UMA-R was feasible and safe to implement for individuals living in the community with chronic stroke. Adherence duration was identified as area of refinement. Participants demonstrated improvements in standardized UE outcomes to support initial efficacy of the UMA-R. Shared decision-making and behavior change frameworks can support the implementation of UE self-directed rehabilitation. Our results warrant the refinement and further testing of the UMA-R.
Stroke is the leading cause of disability in adults in the United States.1,2 Approximately 50% of stroke survivors experience upper extremity (UE) impairment,3,4 and of those, over 60% have continued impairment after 6 months.5,6 Based on the International Classification of Functioning, Disability, and Health, impairment is defined as limitations in body function and structures.7 Limited UE functional use after stroke can affect performance with activities of daily living, return to work, and quality of life.8, 9, 10 Chronic UE disability and subsequent effect on participation and independence highlights the need for continued therapy beyond acute and subacute periods of recovery as individuals re-integrate back into the community.11
Evidence suggests that UE improvements achieved in the clinic do not automatically generalize to actual use of the affected UE in the home and community.12, 13, 14, 15, 16 In other words, what clients do in the clinic is different from what they do at home. Actual arm use, defined as the use of the affected UE in everyday activities in real world settings,17 was first introduced into the stroke literature as a key outcome for Constraint Induced Movement Therapy (CIMT) measured by the Motor Activity Log (MAL). Despite the widespread research on CIMT, actual arm use as a construct has been largely understudied. Distinct from motor capacity or functional ability, emerging literature suggests that actual arm use is a complex behavior informed by multiple factors related to the person, their environment, and the task itself.18 Therefore, interventional approaches that target actual arm use likely require self-directed training in daily activities completed in real-world settings.19
We define self-directed rehabilitation as structured motor or functional training program with clear patient objectives completed remotely in the client’s home under indirect supervision of a clinician.20,21 Evidence comparing the effectiveness of home-based vs clinic-based rehabilitation has consistently demonstrated no differences in physical and motor outcomes for older adult populations with general chronic health conditions.20,22, 23, 24 Similarly, home-based UE interventions in stroke are comparable with clinic-based interventions for UE activity performance and dexterity.25 Self-directed training approaches are also effective in post stroke rehabilitation. There is a wide range of self-directed training approaches with studies using robotics, interactive gaming, CIMT, and electrical stimulation (e-stim) with CIMT and e-stim approaches demonstrating most robust improvements in UE functional ability and daily use.26 While CIMT is the most established self-directed training approach, common limitations include the narrow inclusion criteria 27,28 and limited ecological validity of constraining the less affected hand because individuals complete most daily tasks bilaterally.29,30 Additionally, no differences were reported between structured vs non-structured approaches within self-directed rehabilitation studies.19 The literature on the effectiveness of self-directed UE rehabilitation in stroke is emerging and the available evidence is mixed.19,24 More work is needed in this area to delineate key components of self-directed UE rehabilitation that effectively maximize actual arm use in daily life.
To address the need to better understand and develop effective home-based, self-directed rehabilitation approaches, Use My Arm-Remote (UMA-R) was adapted with permission from the original Use My Arm.31,32 UMA-R is a self-directed rehabilitation program informed by both motor learning principles and health behavior change frameworks. UMA-R combines several evidence-based approaches (eg, task-oriented practice, motivational interviewing (MI), ecological momentary assessments [EMAs]) to target actual arm use. Distinct from clinic-based rehabilitation, self-directed rehabilitation in the home setting must address unique challenges related to decreased motivation and adherence, because clients must self-initiate training and complete the recommended tasks with indirect therapist supervision. UMA-R uses shared decision-making (SDM) approach and EMAs to maximize intrinsic motivation and adherence.
The task-oriented approach, also referred to as task specific training in the literature, is based on the principles of neuroplasticity and the systems model of motor control.33 Task-oriented approach emphasizes the importance of selecting tasks that are meaningful to the client, training in real-world environments outside of therapy settings, and the use of motor learning principles (eg, repetition and practice, adaptation).33 UE training using a task-oriented approach can be implemented by having clients select and practice meaningful everyday tasks that require UE use. Emphasis is placed on using the client’s own materials within the context of daily routines (eg, practicing brushing their hair using their own brush during their self-care routine).
SDM is a collaborative process between patients, families, and clinicians when patient values and preferences are prioritized along with existing evidence when making decisions about a specific scenario.34 MI can be used to implement an SDM approach. MI is a counseling approach based on the guiding principle that behavior change is contingent on the client- rather than the clinician-driving decision and expressing the reasons for change.35 MI has been integrated into cognitive and behavioral interventions to maximize self-initiated action and encourage activity engagement.35
EMA produces real-time data about an individual’s behavior, mood, or experiences in their natural settings.36,37 EMA has been used extensively to target health behavior change such as smoking cessation, diabetes management, and weight loss.36 EMA in stroke has been used to measure caregiver burden,38 predictors of depression,39,40 and fatigue.41 The emergence and use of mobile technologies (ie, text messages or phone app) has greatly increased the ability to implement EMA successfully in a variety of clinical populations and is well-suited to capture client’s daily activities in the context of their routines at home.
UMA-R addresses the unique challenges for self-directed UE training and bridges the gap between gains made in the clinic and generalized arm use in real world settings. As an initial step in intervention development and testing, the primary aim of the study was to examine the feasibility of the UMA-R protocol by addressing the following domains: recruitment and retention rates, intervention delivery, intervention acceptance, intervention adherence, and safety. The secondary aim of the study was to report initial efficacy of the UMA-R as measured by UE outcomes. […]
TBI Rehabilitation 