Transitional care practices, services, and delivery in childhood cancer survivor programs: A survey study of U.S. survivorship providers

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.

Transition from pediatric to adult follow-up care in childhood cancer survivors—a systematic review

“…Fifteen studies reported on barriers and facilitators encountered when CCSs transitioned from pediatric to adult LTFU care (Table 3). Seven studies included survivors' perspectives [13,[25][26][27][28][29][30], five included HCPs' perspectives [31][32][33][34][35], two included survivors' and parents' perspectives [36,37], and one included survivors', parents', and HCPs' perspectives [38]. The term "HCP" was used to refer to professionals from different disciplines, such as pediatric oncologists, primary care physicians, health care practitioners, nurses, nurse practitioners, psychologists, and social workers.…”

Late Effects After Haematopoietic Stem Cell Transplantation in ALL, Long-Term Follow-Up and Transition: A Step Into Adult Life

“…The tools are useful in identifying areas in which an individual survivor needs more support or education. The most frequently identified barriers to transition in these publications related to knowledge, education and empowerment of the survivors as well as the knowledge and education of healthcare providers (193,194,(212)(213)(214)(215)(216)(217)(218)(219)(220)(221)(222)(223). This highlights that education of both survivors and their healthcare providers is integral part of successful transition.…”

Childhood cancer survivorship and late effects: The landscape in India in 2020

“…The burgeoning number of childhood cancer survivors in high‐income countries with their morbidity burden necessitated steady and sustained efforts in developing services for their needs. Although there is variation in provision of these services, there is universal agreement on their need 34,35 …”

“…There is no universally agreed “best” model, and the choice depends on patient volumes, complexity of needs, resources available, and travel distances. Some of these models include follow‐up in primary pediatric oncology setting, transitioning to an adult oncology setting, specialized long‐term follow‐up clinic or shared care 35 . The second noteworthy development is that of guidelines to support lifelong risk‐based follow‐up for this population.…”