Transitional care practices, services, and delivery in childhood cancer survivor programs

A survey study of U.S. survivorship providers

Karim Thomas Sadak, Dava Szalda, Bruce R. Lindgren, Karen E. Kinahan, Debra Eshelman-Kent, Lisa A. Schwartz, Tara Henderson, David R. Freyer

Research output: Contribution to journalArticle

Abstract

Purpose: There are limited reports describing transition of young adult childhood cancer survivors (CCS) from pediatric to adult-focused survivorship care. The purpose of this study was to characterize current transitional care practices in the United States. Project Description: An online survey was sent to one preselected respondent at 163 Children's Oncology Group member institutions in the United States. Data were collected about (i) the availability and type of long-term follow-up services for adult CCS and (ii) policies and procedures for transitioning. Logistic regression was used to evaluate factors related to care for CCS. Results: The response rate was 60% (97/163). Eighty-one respondents (84%) represented centers with specialized pediatric-focused CCS programs. Thirty-nine percent (38/97) of programs delivered specialized transitional care for adult CCS. Adult-centered care was delivered in both pediatric (39%, 15/38) and adult oncology clinics (39%, 15/38). The most common perceived transition barriers were lack of available partnering adult providers and adult providers’ lack of knowledge regarding CCS. The larger the program in terms of new diagnoses, the more likely they were to offer formal transitional care (<50 vs >200: odds ratios [OR] 20.0; 95% CI 3.2, 100.0, P = 0.004). Conclusions: A variety of models are utilized for delivering care to adult CCS. Our results suggest that interventions to establish effective partnerships with adult providers on appropriate care of CCS may facilitate expanded availability of these services.

Original languageEnglish (US)
Article numbere27793
JournalPediatric Blood and Cancer
Volume66
Issue number8
DOIs
StatePublished - Jan 1 2019

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Survivors
Survival Rate
Neoplasms
Pediatrics
Surveys and Questionnaires
Transitional Care
Young Adult
Logistic Models
Odds Ratio

Keywords

  • transition childhood cancer survivor survey

PubMed: MeSH publication types

  • Journal Article

Cite this

Transitional care practices, services, and delivery in childhood cancer survivor programs : A survey study of U.S. survivorship providers. / Sadak, Karim Thomas; Szalda, Dava; Lindgren, Bruce R.; Kinahan, Karen E.; Eshelman-Kent, Debra; Schwartz, Lisa A.; Henderson, Tara; Freyer, David R.

In: Pediatric Blood and Cancer, Vol. 66, No. 8, e27793, 01.01.2019.

Research output: Contribution to journalArticle

Sadak, Karim Thomas ; Szalda, Dava ; Lindgren, Bruce R. ; Kinahan, Karen E. ; Eshelman-Kent, Debra ; Schwartz, Lisa A. ; Henderson, Tara ; Freyer, David R. / Transitional care practices, services, and delivery in childhood cancer survivor programs : A survey study of U.S. survivorship providers. In: Pediatric Blood and Cancer. 2019 ; Vol. 66, No. 8.
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abstract = "Purpose: There are limited reports describing transition of young adult childhood cancer survivors (CCS) from pediatric to adult-focused survivorship care. The purpose of this study was to characterize current transitional care practices in the United States. Project Description: An online survey was sent to one preselected respondent at 163 Children's Oncology Group member institutions in the United States. Data were collected about (i) the availability and type of long-term follow-up services for adult CCS and (ii) policies and procedures for transitioning. Logistic regression was used to evaluate factors related to care for CCS. Results: The response rate was 60{\%} (97/163). Eighty-one respondents (84{\%}) represented centers with specialized pediatric-focused CCS programs. Thirty-nine percent (38/97) of programs delivered specialized transitional care for adult CCS. Adult-centered care was delivered in both pediatric (39{\%}, 15/38) and adult oncology clinics (39{\%}, 15/38). The most common perceived transition barriers were lack of available partnering adult providers and adult providers’ lack of knowledge regarding CCS. The larger the program in terms of new diagnoses, the more likely they were to offer formal transitional care (<50 vs >200: odds ratios [OR] 20.0; 95{\%} CI 3.2, 100.0, P = 0.004). Conclusions: A variety of models are utilized for delivering care to adult CCS. Our results suggest that interventions to establish effective partnerships with adult providers on appropriate care of CCS may facilitate expanded availability of these services.",
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