title: Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care.
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.
authors.affiliation: Department of Behavioral Sciences and Health Education, Emory University School of Public Health, Room 524, 1518 Clifton Road NE, Atlanta, GA, 30322, USA. cjberg@emory.edu.
authors.forename: Carla J
authors.initials: CJ
authors.lastname: Berg
authors.affiliation: Department of Behavioral Sciences and Health Education, Emory University School of Public Health, Room 524, 1518 Clifton Road NE, Atlanta, GA, 30322, USA.
authors.forename: Erin
authors.initials: E
authors.lastname: Stratton
authors.affiliation: Department of Radiology, School of Medicine, Woodruff Health Sciences Center, Emory University, 1440 Clifton Road NE, Atlanta, GA, 30322, USA.
authors.forename: Natia
authors.initials: N
authors.lastname: Esiashvili
authors.affiliation: Aflac Cancer Center/Department of Pediatrics, Department of Oncology, School of Medicine, Woodruff Health Sciences Center, Emory University, 1440 Clifton Road NE, Atlanta, GA, 30322, USA.
authors.forename: Ann
authors.initials: A
authors.lastname: Mertens
mesh_terms: D000293:Adolescent; D000328:Adult; D000359:Aftercare; D001291:Attitude of Health Personnel; D000073116:Cancer Survivors / Q000523:psychology*; D003266:Continuity of Patient Care; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000517:prevention & control* / Q000523:psychology*; D010347:Patient Care Planning; D010465:Perception; D011379:Prognosis; D015996:Survival Rate; D055815:Young Adult
keywords: Childhood cancer; Survivorship care plans; Transition to survivorship; Young adults