ORIGINAL RESEARCH| Volume 102, ISSUE 12, P2353-2361, December 2021

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

Published:August 02, 2021DOI:


      • 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.



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


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


      Electronic or telephone survey.


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


      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.


      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.


      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.


      List of abbreviations:

      CDE (common data element), PSM (prospective surveillance model), US (United States)
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      1. CureSearch for Children's Cancer. Childhood cancer statistics. Available at: Accessed May 12, 2020.

      2. American Cancer Society. Late effects of childhood cancer treatment. Available at: Accessed May 12, 2020.

        • Oeffinger KC
        • Mertens AC
        • Sklar CA
        • et al.
        Chronic health conditions in adult survivors of childhood cancer.
        N Engl J Med. 2006; 355: 1572-1582
        • L'Hotta AJ
        • Beam IA
        • Thomas KM.
        Development of a comprehensive pediatric oncology rehabilitation program.
        Pediatr Blood Cancer. 2020; 67: e28083
        • Tanner LR
        • Hooke MC.
        Improving body function and minimizing activity limitations in pediatric leukemia survivors: the lasting impact of the Stoplight Program.
        Pediatr Blood Cancer. 2019; 66: e27596
        • Paltin I
        • Schofield HL
        • Baran J.
        Rehabilitation and pediatric oncology: supporting patients and families during and after treatment.
        Curr Phys Med Rehabil Rep. 2018; 6: 107-114
        • Stout NL
        • Sleight A
        • Pfeiffer D
        • Galantino ML
        • deSouza B
        Promoting assessment and management of function through navigation: opportunities to bridge oncology and rehabilitation systems of care.
        Support Care Cancer. 2019; 27: 4497-4505
        • Alfano CM
        • Pergolotti M.
        Next-generation cancer rehabilitation: a giant step forward for patient care.
        Rehabil Nurs J. 2018; 43: 186-194
        • Stubblefield MD
        • Hubbard G
        • Cheville A
        • Koch U
        • Schmitz KH
        • Dalton SO.
        Current perspectives and emerging issues on cancer rehabilitation.
        Cancer. 2013; 119: 2170-2178
        • Alfano CM
        • Cheville AL
        • Mustian K.
        Developing high-quality cancer rehabilitation programs: a timely need.
        Am Soc Clin Oncol Educ Book. 2016; 35: 241-249
        • Stout NL
        • Silver JK
        • Raj VS
        • et al.
        Toward a national initiative in cancer rehabilitation: recommendations from a subject matter expert group.
        Arch Phys Med Rehabil. 2016; 97: 2006-2015
        • Ghafoor S
        • Fan K
        • Williams S
        • et al.
        Beginning restorative activities very early: implementation of an early mobility initiative in a pediatric onco-critical care unit.
        Front Oncol. 2021; 11645716
        • Harman JL
        • Molnar Jr, AE
        • Jacola LM
        • et al.
        Establishing a hospital-based early intervention program for young children with cancer: a quality improvement initiative.
        Clin Pract Pediatr Psychol. 2020;
        • Stout NL
        • Binkley JM
        • Schmitz KH
        • et al.
        A prospective surveillance model for rehabilitation for women with breast cancer.
        Cancer. 2012; 118: 2191-2200
        • Silver JK
        • Baima J
        • Mayer RS.
        Impairment-driven cancer rehabilitation: an essential component of quality care and survivorship.
        CA Cancer J Clin. 2013; 63: 295-317
        • Yang EJ
        • Ahn S
        • Kim EK
        • et al.
        Use of a prospective surveillance model to prevent breast cancer treatment-related lymphedema: a single-center experience.
        Breast Cancer Res Treat. 2016; 160: 269-276
        • Lai L
        • Binkley J
        • Jones V
        • et al.
        Implementing the prospective surveillance model (PSM) of rehabilitation for breast cancer patients with 1-year postoperative follow-up, a prospective, observational study.
        Ann Surg Oncol. 2016; 23: 3379-3384
        • Stout NL
        • Pfalzer LA
        • Springer B
        • et al.
        Breast cancer–related lymphedema: comparing direct costs of a prospective surveillance model and a traditional model of care.
        Phys Ther. 2012; 92: 152-163
        • Harris PA
        • Taylor R
        • Thielke R
        • Payne J
        • Gonzalez N
        • Conde JG.
        Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support.
        J Biomed Inform. 2009; 42: 377-381
        • Harris PA
        • Taylor R
        • Minor BL
        • et al.
        The REDCap consortium: building an international community of software platform partners.
        J Biomed Inform. 2019; 95103208
        • Chan D.
        Functional relations among constructs in the same content domain at different levels of analysis: a typology of composition models.
        J Appl Psychol. 1998; 83: 234-246
        • Sandelowski M.
        Whatever happened to qualitative description?.
        Res Nurs Health. 2000; 23: 334-340
        • Mewes JC
        • Steuten LMG
        • Ijzerman MJ
        • van Harten WH.
        Effectiveness of multidimensional cancer survivor rehabilitation and cost-effectiveness of cancer rehabilitation in general: a systematic review.
        Oncologist. 2012; 17: 1581-1593
        • Halpern MT
        • McCabe MS
        • Burg MA.
        The cancer survivorship journey: models of care, disparities, barriers, and future directions.
        Am Soc Clin Oncol Educ Book. 2016; 35: 231-239
        • Tanner L
        • Keppner K
        • Lesmeister D
        • Lyons K
        • Rock K
        • Sparrow J.
        Cancer rehabilitation in the pediatric and adolescent/young adult population.
        Semin Oncol Nurs. 2020; 36150984
        • Silver JK
        • Raj VS
        • Fu JB
        • et al.
        Most National Cancer Institute-Designated Cancer Center websites do not provide survivors with information about cancer rehabilitation services.
        J Cancer Educ. 2018; 33: 947-953
        • Egan MY
        • McEwen S
        • Sikora L
        • Chasen M
        • Fitch M
        • Eldred S.
        Rehabilitation following cancer treatment.
        Disabil Rehabil. 2013; 35: 2245-2258
        • Glasgow RE
        • Vogt TM
        • Boles SM.
        Evaluating the public health impact of health promotion interventions: the RE-AIM framework.
        Am J Public Health. 1999; 89: 1322-1327
        • Kirchner JE
        • Waltz TJ
        • Powell BJ
        • Smith JL
        • Proctor EK
        Implementaation strategies.
        (editors)in: Brownson RC Colditz GA Proctor EK Dissemination and implementation research in health: translating science to practice. Oxford University Press, New York2017
        • Proctor EK
        • Powell BJ
        • McMillen JC.
        Implementation strategies: recommendations for specifying and reporting.
        Implement Sci. 2013; 8: 139
        • Powell BJ
        • Waltz TJ
        • Chinman MJ
        • et al.
        A refined compilation of implementation strategies: results from the Expert Recommendations for Implementing Change (ERIC) project.
        Implement Sci. 2015; 10: 21
        • Silver JK
        • Raj VS
        • Fu JB
        • Wisotzky EM
        • Smith SR
        • Kirch RA.
        Cancer rehabilitation and palliative care: critical components in the delivery of high-quality oncology services.
        Support Care Cancer. 2015; 23: 3633-3643
      3. Braveman B Newman R Cancer and occupational therapy. AOTA Press, Bethesda2020
      4. APTA Oncology. APTA Oncology Special Interest Groups. Available at: Accessed September 12, 2020.

      5. American Speech-Language-Hearing Association. Cancer care: enhancing communication, swallowing, and quality of life. Available at: Accessed September 12, 2020.

      6. APTA Oncology. Specialization in oncology PT. Available at: Accessed September 12, 2020.

      7. American Congress of Rehabilitation Medicine. Pediatric Task Force. Available at: Accessed October 12, 2020.

        • Stout NL
        • Santa Mina D
        • Lyons KD
        • Robb K
        • Silver JK
        A systematic review of rehabilitation and exercise recommendations in oncology guidelines.
        CA Cancer J Clin. 2021; 71: 149-175
        • Nadkarni PM
        • Brandt CA.
        The Common Data Elements for cancer research: remarks on functions and structure.
        Methods Inf Med. 2006; 45: 594-601
        • Sheehan J
        • Hirschfeld S
        • Foster E
        • et al.
        Improving the value of clinical research through the use of Common Data Elements.
        Clin Trials. 2016; 13: 671-676