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)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: August 02, 2021
Accepted:
May 9,
2021
Received in revised form:
April 29,
2021
Received:
March 30,
2021
Footnotes
Disclosures: none
Identification
Copyright
© 2021 The American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
