Childhood cancer survival rates have significantly improved, reaching nearly 85% five-year survival. However, a substantial portion of these survivors (two-thirds) experience at least one chronic or long-term adverse effect of cancer treatment. These effects include cancer-related fatigue, muscle weakness, peripheral neuropathy, balance and ambulation deficits, and decreased joint range of motion. Prolonged bed rest during treatment exacerbates these impairments, leading to rapid deconditioning and significant loss of muscle mass and strength. While potentially reversible, these adverse effects can persist or worsen over time. The increased survival rates underscore a growing need for rehabilitation services to mitigate the long-term impact on physical function and quality of life. This study addresses the underutilization of pediatric oncology rehabilitation services, exploring referral patterns, identifying barriers to care, and proposing a framework for improved service delivery and future research. The current literature highlights the potential benefits of physical therapy (PT) in minimizing adverse effects and improving physical function. Systematic reviews support the benefits of exercise and motor interventions on various outcomes, including fatigue, range of motion, and functional mobility. However, evidence for other rehabilitation disciplines like occupational therapy and speech-language pathology remains limited, and the underutilization of these services is a concern. This study aims to fill the gap in knowledge regarding pediatric oncology rehabilitation service provision and referral patterns specifically within the Canadian context.

Existing research indicates the potential benefits of physical therapy (PT) in minimizing the severity of adverse effects and improving the physical function of children and adolescents with cancer. A 2019 scoping review explored the research evidence on PT benefits and identified priorities for future research. While the evidence base is still developing, studies suggest that hospital and home-based PT programs are feasible and show promise for improving outcomes. Systematic reviews have evaluated the effects of exercise on physical function, showing benefits for fatigue, range of motion, and functional mobility. However, research on the effectiveness of other rehabilitation disciplines, such as occupational therapy and speech-language pathology, is limited, suggesting underutilization of these services. Recent reviews have examined the effectiveness of play therapy, indicating potential benefits in reducing anxiety and fear. Despite growing evidence supporting rehabilitation, pediatric oncology rehabilitation services are underutilized, as shown by retrospective cohort studies demonstrating low referral and participation rates. Prior to this study, no published research explored pediatric oncology rehabilitation service provision and referral patterns in Canada.

This cross-sectional study used a web-based survey administered through REDCap, a secure research electronic data capture service. The survey, available in English and French, was distributed to healthcare professionals (HCPs) across Canada who provided and/or referred children and adolescents with cancer to rehabilitation services. Recruitment involved professional networking, contacting organizations, and using email and newsletters. Reminders were sent every three weeks to increase response rates. The sample size was estimated based on a previous survey of adult oncology service provision, aiming for at least 30 respondents given the lower incidence of pediatric cancers in Canada. The survey included three sections: demographics, rehabilitation service provision and practice patterns, and barriers to implementing rehabilitation programs. Data analysis involved calculating percentages, frequencies, and proportions, and framework analysis was used to categorize open-ended questions into themes. Two investigators independently verified the data and themes.

Of 54 survey responses, 34 were from HCPs who refer children to pediatric oncology rehabilitation services. Results suggest that approximately 25% of children are referred, primarily when they present with or are at risk of significant functional disability due to surgery. The medical team (oncologists, nurses, etc.) primarily referred children to rehabilitation in acute care hospitals. A primary barrier to service provision identified across all HCPs was a lack of funding and resources. Medical professionals highlighted a lack of specialized pediatric oncology rehabilitation services, while rehabilitation professionals identified a lack of pediatric oncology-specific space and equipment as significant barriers. Thematic analysis of open-ended responses revealed three key barriers: (1) lack of dedicated funding and resources, (2) limited access, and (3) the need for specialized pediatric oncology rehabilitation services. The most common reasons for not referring children to rehabilitation were parent/patient choice. Regarding referral reasons, surgery/amputation, peripheral neuropathy, and altered mobility were top reasons reported by medical professionals, while deconditioning, peripheral neuropathy and weakness were cited by rehabilitation professionals. A majority of HCPs indicated that they did not follow any general pediatric oncology rehabilitation clinical practice guidelines, but most considered having such guidelines to be very important.

This study is the first to survey pediatric oncology rehabilitation service provision and referral patterns across Canada. The findings highlight the underutilization of these services, with referral primarily occurring after major surgery. This contrasts with the potential benefits of rehabilitation across the entire cancer trajectory. The identified barriers—lack of funding, resources, specialized services, and access—are consistent with findings from other studies on adult and pediatric oncology rehabilitation. The significant role of parent/patient choice in non-referral may be attributed to the time burden of cancer treatments and the perception of rehabilitation as a lower priority. This suggests a need for educational efforts to improve understanding of the benefits of rehabilitation. The significant number of barriers related to funding, resources, and access underscore the necessity of a multi-pronged approach to address the current underutilization of services. The lack of specialized training for rehabilitation professionals in pediatric oncology and the need to improve knowledge among medical professionals regarding the benefits of rehabilitation are critical areas to address.

This study provides valuable insights into the current state of pediatric oncology rehabilitation in Canada, identifying significant barriers and proposing a framework for action. The framework includes strategies to advocate for increased funding, develop guidelines, enhance education, improve early identification of impairments, innovate through telehealth, and engage families. Further research is crucial to understand the perspectives of children and families and address identified barriers to care. Addressing the underutilization of pediatric oncology rehabilitation services requires a concerted effort among HCPs, researchers, policymakers, and patient advocacy groups.

Several limitations exist. The study's sample size, while exceeding the estimated target, might not fully represent all pediatric oncology HCPs in Canada due to regional variations in service provision. The inability to follow up on unclear or incomplete responses is another limitation. The survey did not collect identifying information to protect privacy, limiting the potential for further investigation. Despite these limitations, this research provides important direction to enhance pediatric oncology rehabilitation services in Canada.