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Limitations of Current Rehabilitation Practices in Pediatric Oncology: Implications for Improving Comprehensive Clinical Care

Published:August 02, 2021DOI:https://doi.org/10.1016/j.apmr.2021.05.021

      HIGHLIGHTS

      • Hospitals/clinics lack multidisciplinary pediatric oncology rehabilitation programs.
      • Large variability in rehabilitation services available for children with cancer.
      • Gap in services addressing long-term rehabilitation needs of children with cancer.
      • Need for education and training opportunities in pediatric oncology rehabilitation.

      Abstract

      Objective

      To identify the proportion of hospitals/clinics in the United States (US) that have a comprehensive pediatric oncology rehabilitation program and characterize current practices.

      Design

      Cross-sectional survey of rehabilitation providers in the US and internationally.

      Setting

      Electronic or telephone survey.

      Participants

      Rehabilitation or supportive care practitioners employed at a hospital, outpatient clinic, or medical university (N=231).

      Interventions

      Electronic and telephone survey. The full electronic survey contained 39 questions, provided opportunities for open-ended responses, and covered 3 main categories specific to pediatric cancer rehabilitation: service delivery, rehabilitation program practices, and education/training. The short telephone survey included 4 questions from the full survey and was designed to answer the primary study objective.

      Main Outcome Measures

      Proportion of hospitals/clinics with a comprehensive pediatric oncology rehabilitation program.

      Results

      This cohort includes rehabilitation providers from 191 hospitals/clinics, 49 states within the US, and 5 countries outside of the US. Of hospitals/clinics represented from the full and short survey, 145 (76%) do not have an established pediatric oncology rehabilitation program. Nearly half of full survey respondents reported no knowledge of the prospective surveillance model, and 65% reported no education was provided to them regarding pediatric cancer rehabilitation. Qualitative survey responses fell into 3 major themes: variability in approach to rehabilitation service delivery, program gaps, and need for additional educational opportunities.

      Conclusions

      There is evidence of limited comprehensive rehabilitation programming for children with cancer as demonstrated by the lack of programs with coordinated interdisciplinary care, variability in long-term follow-up, and absence of education and training. Research is needed to support the development and implementation of comprehensive pediatric oncology rehabilitation programs.

      Keywords

      List of abbreviations:

      CDE (common data element), PSM (prospective surveillance model), US (United States)
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