Natasha N Frederick1,2, Sharon L Bober2,3, Lexie Berwick2, Mary Tower4, Lisa B Kenney2,3. 1. Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts. 2. Harvard Medical School, Boston, Massachusetts. 3. Dana-Farber Cancer Institute Perini Family Survivors Center, Boston, Massachusetts. 4. Long Term Follow-up Clinic in Pediatric Oncology at Massachusetts General Hospital, Boston, Massachusetts.
Abstract
BACKGROUND: Childhood cancer survivors (CCSs) remain at risk for developing treatment-associated health conditions as they age; however, many do not obtain recommended follow-up, putting them at unnecessary risk for morbidity. Educational interventions targeted at providing survivors with the knowledge and skills necessary for healthcare independence might improve adherence and outcomes as they transition care to the adult medical system. OBJECTIVE: To identify informational needs, educational preferences, and support that young adult CCSs perceive as beneficial for transition from pediatric to adult medical care. DESIGN/ METHOD: Sixteen young adult CCSs (ages 22-39 years) who have transitioned to adult care participated in focus groups led by a trained moderator and analyzed using a thematic analysis approach. RESULTS: Four major themes emerged: (1) education preferences-pediatric oncology provider as the primary source of information and guidance, enhanced by other formats, and early and ongoing engagement in education; (2) family role in transition-desire for independence and acknowledgement of need for ongoing parental support; (3) expectations for adult providers, such as close relationships, open communication, and care coordination; and (4) knowledge deficits regarding disease/treatment history, risk for long-term complications, and navigation of the adult medical system. CONCLUSION: Transition education as described by young adult CCSs should be a developmentally appropriate process beginning in early adolescents, primarily administered by pediatric oncology providers, and delivered in multiple formats. While healthcare independence is a goal for young adult CCSs, all stakeholders must recognize that families and providers continue to have an important role supporting survivors with transition logistics and medical decision-making.
BACKGROUND: Childhood cancer survivors (CCSs) remain at risk for developing treatment-associated health conditions as they age; however, many do not obtain recommended follow-up, putting them at unnecessary risk for morbidity. Educational interventions targeted at providing survivors with the knowledge and skills necessary for healthcare independence might improve adherence and outcomes as they transition care to the adult medical system. OBJECTIVE: To identify informational needs, educational preferences, and support that young adult CCSs perceive as beneficial for transition from pediatric to adult medical care. DESIGN/ METHOD: Sixteen young adult CCSs (ages 22-39 years) who have transitioned to adult care participated in focus groups led by a trained moderator and analyzed using a thematic analysis approach. RESULTS: Four major themes emerged: (1) education preferences-pediatric oncology provider as the primary source of information and guidance, enhanced by other formats, and early and ongoing engagement in education; (2) family role in transition-desire for independence and acknowledgement of need for ongoing parental support; (3) expectations for adult providers, such as close relationships, open communication, and care coordination; and (4) knowledge deficits regarding disease/treatment history, risk for long-term complications, and navigation of the adult medical system. CONCLUSION: Transition education as described by young adult CCSs should be a developmentally appropriate process beginning in early adolescents, primarily administered by pediatric oncology providers, and delivered in multiple formats. While healthcare independence is a goal for young adult CCSs, all stakeholders must recognize that families and providers continue to have an important role supporting survivors with transition logistics and medical decision-making.
Authors: Joemy M Ramsay; Karely Mann; Sapna Kaul; Eduardo R Zamora; Rochelle R Smits-Seemann; Anne C Kirchhoff Journal: J Adolesc Young Adult Oncol Date: 2018-01-18 Impact factor: 2.223
Authors: Karim Thomas Sadak; Milki T Gemeda; Michelle Grafelman; Joseph P Neglia; David R Freyer; Eileen Harwood; Jude Mikal Journal: BMC Cancer Date: 2020-09-21 Impact factor: 4.430
Authors: Joel Milam; David R Freyer; Kimberly A Miller; Jessica Tobin; Katherine Y Wojcik; Cynthia N Ramirez; Anamara Ritt-Olson; Stefanie M Thomas; Lourdes Baezconde-Garbanati; Michael Cousineau; Denise Modjeski; Sapna Gupta; Ann S Hamilton Journal: JNCI Cancer Spectr Date: 2021-07-17
Authors: Karim Thomas Sadak; Milki Gemeda; Michelle C Grafelman; Taiwo O Aremu; Joseph P Neglia; David R Freyer; Eileen Harwood; Jude Mikal Journal: Cancer Med Date: 2021-08-06 Impact factor: 4.452