Advancing Pediatric Oncology Rehabilitation: Survey Findings of Health Professionals' Perceptions of Barriers to Care and a Framework for Action

Childhood cancer survival has increased, with current 5-year survival approaching 85%. However, an estimated two thirds of children will develop at least one chronic or long-term treatment-related adverse effect, such as cancer-related fatigue, muscle weakness, chemotherapy-induced peripheral neuropathy, balance and ambulation deficits, and decreased joint range of motion. During active treatment, prolonged bedrest can lead to rapid deconditioning, with muscle mass and strength losses reported at 1.0–1.5% per day (10–15% per week). These adverse effects across musculoskeletal, neurological, and cardiorespiratory systems may persist or worsen over time, affecting long-term function and quality of life. As survival improves, the need for rehabilitation services to mitigate long-term functional impact grows. Despite this, evidence suggests pediatric oncology rehabilitation is underutilized, and referral patterns in Canada have not been well described. This study explores referral practices, barriers to access and provision of pediatric oncology rehabilitation across Canada, and proposes an action framework to optimize care and guide research.

Evidence supports the potential benefits and feasibility of physical therapy (PT) and exercise interventions for children and adolescents with cancer, though high-quality efficacy data are limited. A 2019 scoping review identified 12 studies (including one RCT and one pilot RCT) showing feasibility of hospital- and home-based PT and promising effects on function. Systematic reviews report exercise benefits for fatigue, range of motion, activity levels, aerobic capacity, mobility, strength, coordination, and participation; adherence to supervised exercise interventions is high (~87%), with improvements in strength, activity, BMI, and fatigue. Literature on occupational therapy and speech-language pathology in pediatric oncology is sparse, with indications of underutilization of OT. Play therapy may reduce anxiety and fear in hospital, but participation is influenced by health status and availability of appropriate space and equipment. Multiple studies show underutilization of rehabilitation: in a US cohort of 5488 children with ALL, only 27.2% received rehabilitation within the first year of admission; among long-term survivors, 9.3% reported receiving PT; and only one-third of hospitalized children with chemotherapy-induced peripheral neuropathy received PT. Prior to this study, Canadian-specific referral patterns and service provision in pediatric oncology rehabilitation had not been published.

Design: Cross-sectional web-based survey using REDCap (University of Alberta), with secure data capture, audit trails, and export features. Ethics approval: Health Research Ethics Board of Alberta: Cancer Committee; electronic informed consent obtained. Timeline: July–October 2017. Participants: Canadian healthcare professionals (HCPs) working in pediatric oncology who had provided and/or referred children/adolescents with cancer to rehabilitation services. Recruitment: Through professional networks and organizations; 28 additional institutions identified online and contacted; study information distributed via emails, newsletters, and e-blasts; electronic reminders every three weeks; snowballing encouraged. Sample size target: ≥30 respondents (based on prior adult oncology rehab survey and lower pediatric cancer incidence). Instrument: Bilingual (English/French) 30-item survey informed by prior oncology rehabilitation studies; three sections: (I) demographics and volumes; (II) rehabilitation service provision and practice patterns; (III) barriers to implementation and availability of programs/guidelines. This publication reports Sections I and III for HCPs who refer to rehabilitation; Section II findings reported elsewhere. Data analysis: Descriptive statistics (frequencies, percentages) in Microsoft Excel. Open-ended responses analyzed via framework analysis by two investigators to categorize responses, verify calculations, identify themes, and interpret in context to inform an action framework. Respondents: 67 consented; 11 did not complete; 2 incomplete. Final included: 54 completed surveys; 34 were HCPs who refer pediatric oncology patients to rehabilitation. Analytic groups: Group 1 (medical team: oncologists, residents, nurses, nurse practitioners) and Group 2 (rehabilitation team: physical therapists, occupational therapists, speech-language pathologists) working in hospital settings and referring to outpatient/community rehabilitation services.

- Respondents: 54 included; 34 were referrers (medical team n=19; rehabilitation team n=15). Overall, approximately 25% of children were referred to rehabilitation services. - Medical team (n=19): - 53% reported they often refer; annual referrals ranged 1–40, most commonly 11–20 (36.8%). - Primary referral locations: acute care hospital services (52%). - 74% indicated the majority of referred children received rehabilitation; common reason for not receiving: parent/patient choice. - Top reasons prompting referral (total citations f=72): surgery and/or amputation (13/72), peripheral neuropathy (12/72), altered mobility (11/72). - Program/guidelines: 79% reported having a rehabilitation program; lack of program reasons included lack of funding (33%) and limited resources (17%). Most do not follow pediatric oncology rehab guidelines (84%), but 63% would very likely adopt guidelines. - Barriers (f=29): lack of funding/resources (41%) and lack of specialized pediatric oncology rehabilitation services (17%) most common. - Rehabilitation team (n=15; guidelines/programs n=14): - Most saw 1–49 pediatric oncology patients/year (73%); 53% sometimes refer to additional/alternate services; referrals ranged 1–40, most commonly 6–10 (40%). - Referral destinations: community/primary care (38%), rehabilitation hospitals (35%). - 53% indicated that 75–100% of those referred to additional/alternate services received care; parent/patient choice cited for non-receipt. - Top reasons prompting referral to additional/alternate services (f=25): deconditioning (6/25), peripheral neuropathy (4/25), weakness (3/25). - Program/guidelines: 50% had a program; where absent, reasons included lack of funding (30%) and resources (40%). Half did not follow guidelines (50%); 71% endorsed importance of implementing guidelines; 78% would adopt them. - Barriers: inappropriate space for rehabilitation (32%) and lack of funding/resources (29%) most common; also insufficient pediatric oncology-specific space/equipment. - Thematic analysis identified three key needs: (1) dedicated funding and resources (staffing, space, equipment, outpatient/community capacity), (2) improved access and transitions (routine screening from diagnosis, availability of outpatient/community services, coordinated handoffs), and (3) specialized pediatric oncology rehabilitation services (training for rehab staff; improved awareness among medical teams).

Findings indicate pediatric oncology rehabilitation remains underutilized in Canada, with referrals typically triggered by severe or surgery-related impairments rather than proactive, routine screening across the cancer trajectory. This aligns with prior reports of low referral rates and underuse of rehabilitation among pediatric oncology populations. The predominance of parent/patient choice as a reason for non-receipt highlights family burden, competing medical priorities, travel/time constraints, and potential gaps in awareness of rehabilitation benefits. Barriers at the system level—insufficient funding, limited space/equipment, and lack of specialized services—impede program availability and quality, particularly in outpatient and community settings where continuity of care is essential. Both medical and rehabilitation professionals express willingness to adopt pediatric oncology-specific clinical practice guidelines, underscoring a readiness for standardized pathways. Addressing education needs (for both oncology teams and rehabilitation providers), implementing routine impairment surveillance from diagnosis, strengthening community capacity, and improving transitions between inpatient and outpatient services can increase timely referrals and uptake, thereby mitigating long-term functional impacts for children with cancer.

This national survey outlines current referral patterns and key barriers to pediatric oncology rehabilitation in Canada and proposes a framework for action to advance care and research. Referrals are often reactive and occur post-surgery or with significant impairments, while major barriers include inadequate funding/resources, limited space/equipment, and lack of specialized services. To address these gaps, the authors propose six actionable strategies: (1) Advocate—partner with patient advocacy groups and cancer organizations to enhance resources; (2) Guide—develop expert opinion guidelines and recommendations tailored to pediatric oncology rehabilitation; (3) Educate—integrate pediatric oncology content into professional training and provide education for oncology teams on rehabilitation benefits; (4) Identify—implement prospective surveillance and brief screening tools during oncology visits to enable timely referrals; (5) Innovate—leverage telehealth/eHealth to improve access and transitions, especially for rural/remote families; and (6) Engage—incorporate family perspectives to ensure patient-centered programs and address barriers to access. Expanded education and capacity-building across acute and community settings and targeted research into family needs should precede rigorous evaluation of referral strategies and program effectiveness.

- Inability to collect identifiable participant information precluded follow-up to clarify unclear or incomplete responses. - Not all Canadian provinces were represented; findings may not reflect all pediatric oncology rehabilitation programs nationwide. - Despite exceeding the targeted sample size, the absolute number of respondents remains relatively small and may not be representative of all pediatric oncology HCPs in Canada. - Self-reported data are subject to response and recall biases. Nevertheless, results are consistent with prior surveys in adult oncology and other jurisdictions.