Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
Rehabilitation practitioners (N = 98) indicate it is very important to have specialized therapists and programs for pediatric cancer rehabilitation, yet only 39% of hospitals have a specialized program. Therapists rarely receive education during academic or clinical training on working with children with cancer, resulting in a lack of consistency in services provided across institutions. A pediatric cancer rehabilitation certification program can help promote an evidence-based standard of care.
Primary Author and Speaker: Molly Houdeshell
Additional Authors and Speakers: Natalie Haffner
Contributing Authors: Taniya Easow Varughese, Allison King, and Allison J L'Hotta
PURPOSE: Impairments in cognition, physical function, and developmental skill acquisition/retention are common among children with cancer. Impairments do not spontaneously resolve, and some side effects do not arise until the child is years off treatment. Rehabilitation services are typically underutilized in oncology and there is limited understanding of how rehabilitation services are delivered to children with cancer. A needs assessment was conducted to better understand current pediatric cancer rehabilitation practices and education opportunities.
DESIGN: This is a cross-sectional survey study. Participants included pediatric practitioners (rehabilitation therapist, MD, psychologist, etc.) employed at hospitals, clinics, or medical universities. Participants were identified and recruited through team members' professional networks, internet research, and snowball sampling. Following the first phase of recruitment we identified pediatric hospitals that had not responded and made three attempts to contact a rehabilitation team member by phone.
METHOD: Participants were recruited via email and completed an online survey through REDCap or by phone and completed an abbreviated 4-question phone survey. Participants provided consent by completing the survey or verbally over the phone. The survey was developed for this study as there are no validated questionnaires regarding pediatric oncology rehabilitation. Questions in the full survey covered 4 main categories specific to pediatric cancer rehabilitation: approach to service delivery, prevalence of specialized programs and providers, assessments utilized, and education/training. The abbreviated survey aimed to identify whether the hospital/clinic provides rehabilitation services to children with cancer, has therapists with roles dedicated to working with children with cancer, and if they have a pediatric oncology rehabilitation program. Descriptive statistics were analyzed to quantify the frequency, percentage, and distribution of responses.
RESULTS: Ninety-eight practitioners representing 55 different pediatric hospitals/clinics, 28 states, and five countries participated in this study. Twenty-three completed the abbreviated survey and 75 completed the full survey. Participants were primarily physical therapists, occupational therapists, and speech-language pathologists. Among respondents, 97 identified their workplace provides rehabilitation services to children with cancer. Few hospitals (14%) provide rehabilitation services in long-term follow-up clinics. Of hospitals and clinics represented, 54% have dedicated therapists that work primarily with the pediatric oncology population and 39% have an established pediatric oncology rehabilitation program (a team of therapists who provide coordinated services throughout the continuum of care). Respondents confirmed the importance of specialized programs (mean: 88.6 on 0-100 scale) and therapists who work primarily with the pediatric oncology population (mean: 81.6). The most commonly reported assessments used include manual muscle, range of motion, and sensory testing, and the Peabody Developmental Motor Scales-2nd Edition; respondents indicated over 30 assessments used with this population. Of respondents, 67% reported not receiving education on providing rehabilitation services to children with cancer during academic or clinical training.
CONCLUSION: There is variability in rehabilitation services provided to children with cancer as evidenced by the variety of service delivery approaches, assessments, and the lack of education on this population. Additional education and training, such as a pediatric cancer rehabilitation certification program, would promote standardization of practice and effective and evidence-based care.
References
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