Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care

• Type of Material: Article
• Authors: Carla Berg, Emory University; Erin Stratton, Emory University; Natia Esiashvili, Emory University; Ann Mertens, Emory University
• Language: English
• Date: 2016-09-01
• Publisher: Springer Verlag
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © American Association for Cancer Education 2015
• Final Published Version (URL): http://dx.doi.org/10.1007/s13187-015-0853-9
• Title of Journal or Parent Work: Journal of Cancer Education
• ISSN: 0885-8195
• Volume: 31
• Issue: 3
• Start Page: 430
• End Page: 442
• Grant/Funding Information: This work was supported by the Georgia Cancer Coalition (PI: Berg), the National Cancer Institute (PI: Berg;5K07CA139114), the Emery Egleston Children’s Research Center (PI: Esiashvili), and the Winship CancerInstitute Kennedy Survivorship Award (PI: Berg)
• Keywords: Life Sciences & Biomedicine; Survivorship care plans; HEALTH BELIEFS; Oncology; PSYCHOLOGICAL OUTCOMES; Public, Environmental & Occupational Health; MEDICAL-CARE; Transition to survivorship; UNITED-STATES; Education & Educational Research; CHILDHOOD-CANCER; Education, Scientific Disciplines; Social Sciences; Childhood cancer; ADOLESCENT; Young adults; LONG-TERM SURVIVORS; Science & Technology
• Research Categories: Health Sciences, Public Health; Health Sciences, Oncology

Abstract

We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18–34 recruited from a university-affiliated children’s hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14 (SD = 3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p = 0.003), being male (p < 0.001), lack of insurance (p = 0.002), and having had chemotherapy (p = 0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivorship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities.