Cerebral Palsy (CP) impacts 1 in 500 Canadian children and most (60-83%) have hand/arm limitations that adversely affect independence in daily activities, school, leisure, and social participation. Optimizing hand/arm abilities via therapeutic, surgical and pharmaceutical interventions is a key focus of CP management for children, parents, and clinicians and can involve many clinic appointments for assessments, therapeutic interventions, and follow-up. At best, this introduces a significant family burden with children missing school and potentially other extra-curricular activities and parents juggling work, scheduling and costs. At worst, it means that many children with CP do not receive rehabilitation services and are systemically underrepresented in clinical research studies that could positively impact their lives. Barriers to in-person care include geographic considerations, time/scheduling, availability, socioeconomic factors, not to mention COVID-19-related interruptions. One potential solution to promote equitable and family-focused access to care is to grow capacity for virtual care that can be managed remotely (e.g. via phone/video).
There is a growing movement "not to return to normal" post-COVID, but rather to use the technological advances and learnings to "expand the range, nature and locations of our services for children with developmental disabilities and their families." Many organizations, including our knowledge partner Holland Bloorview Kids Rehabilitation Hospital (HB), have committed to continuing and expanding virtual care options in response to positive family feedback that supports hybrid (virtual/in-person) models of care. This research priority is shared by the wider community of pediatric rehabilitation. Importantly, the goal is not to displace in-person care; rather it is to understand when virtual options can and cannot be offered. It is essential that virtual care, like in-person care, be evidence-based and aligned with current best research findings, clinical expertise and patient/client preferences.
While novel ways of delivering hand-arm therapy via videoconferencing and caregiver engagement have been innovated, it is still difficult to assess hand-arm skills virtually. Hand-arm rehabilitation must be guided by reliable assessment via a combination of patient-reported outcome measures (PROMs), direct measurement, and therapist observations to capture the function, activity, and participation domains of the World Health Organization's International Classification of Function, Disability, and Health (WHO ICF). Outside of PROMs, there are no validated tools for virtual hand-arm assessment of children with CP. This project will focus on direct- and therapist-observed tools to complement digitally-based PROMs that are already suitable for use in virtual assessment. It will address critical issues in need of systematic research as identified in the literature, specifically: What hand-arm assessments can be done virtually? And, what do families want and need in virtual assessments? This study aims to validate well-established standardized measures for virtual administration to support current research and clinical practice, while also exploring individualized measures that can capture the child engaging in their own environment. The ability to observe children in their natural context is seen as an added advantage of virtual assessment.
This critical and timely work is needed to ensure continuation/expansion of the positive practice changes made to overcome access-to-care barriers. Promoting equity, diversity and inclusion in the healthcare system is an urgent priority of health agencies across Canada. Advancing virtual assessment is a complementary and foundational step towards research and practice of evidence-based virtual interventions. This research will quickly generate evidence on the use of existing tools for virtual assessment and what is achievable in the home context. It will contribute new learnings on assessments that can capture the child more naturally in their own environment. This study will identify areas where virtual assessment may not be advisable with currently available tools and provide family-directed learnings for future work.
This study will adopt a convergent mixed methods design including a test-retest approach to compare the feasibility, acceptability, and equivalence of virtual and in-person hand/arm assessments. 100 children and their caregivers will complete the 1 - 1.5 hour assessment protocol twice, once in clinic and once virtually at home via Zoom video-conferencing. A therapist will oversee both assessments. The virtual assessment will occur first. One week later, families will do a second virtual assessment with the same therapist to establish test-retest reliability and to capture any changes in their experience of or perspectives on virtual assessments. The virtual assessment will occur 1 - 3 days after the re-test. Feasibility, acceptability, and equivalence of in-person and virtual assessment will be investigated through quantitative and qualitative methods. For the latter, this study will purposefully recruit (i.e. with diversity as a focus) 25 parents and 25 children for follow-up interviews. All 6 research therapists will also be interviewed after their final session on the risks, opportunities and challenges of virtual assessment.
