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

• Authors: Carla Berg, Emory University; Erin Stratton, Emory University; Natia Esiashvili, Emory University; Ann Mertens, Emory University
• Journal Title: Journal of Cancer Education
• Volume: Volume 31, Number 3
• Publisher: Springer Verlag | 2016-09-01, Pages 430-442
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1007/s13187-015-0853-9
• Subjects: Health Sciences, Public Health; Health Sciences, Oncology
• Keywords: Science & Technology; Social Sciences; Life Sciences & Biomedicine; Oncology; Education, Scientific Disciplines; Public, Environmental & Occupational Health; Education & Educational Research; Survivorship care plans; Transition to survivorship; Young adults; Childhood cancer; LONG-TERM SURVIVORS; CHILDHOOD-CANCER; PSYCHOLOGICAL OUTCOMES; HEALTH BELIEFS; UNITED-STATES; MEDICAL-CARE; ADOLESCENT

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.