title: Barriers to follow-up care among survivors of adolescent and young adult cancer.
abstract: Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) cancer has been documented, survivors often report forgoing recommended care due to cost. We sought to understand whether additional barriers to follow-up care exist for AYA survivors.
  
  
  
  We recruited survivors who were diagnosed with cancer between the ages of 15 and 39 using the Utah Cancer Registry (UCR). Overall, 28 survivors participated in 6 focus groups held between March and May 2015 in Salt Lake City and St. George, UT. Focus group discussions focused on the reasons survivors may or may not attend recommended medical visits after completing therapy.
  
  
  
  Survivors reported myriad barriers to follow-up medical visits, including lack of clear provider recommendation, fear of recurrent cancer diagnosis, wishing to move on with life, competing life responsibilities due to work and children, and not perceiving the need for a visit due to lack of symptoms.
  
  
  
  Though cost likely plays a major part in follow-up care adherence for survivors of AYA cancer, in our focus groups, participants indicated there were many other psychosocial and logistic barriers to care. Such factors play an important role in the day-to-day lives of survivors and are critical in medical decision-making.
  
  
  
  Several factors impede follow-up care adherence for survivors of AYA cancer that are amenable to interventions, including clearer provider recommendations, flexible appointment times, and childcare availability in clinics.
authors: Department of Pediatrics, Division of Pediatric Hematology/Oncology, University of Utah, Salt Lake City, UT, USA. Rochelle.smits@hci.utah.edu.|Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, 2000 Circle of Hope, Rm 4124, Salt Lake City, UT, 84112, USA. Rochelle.smits@hci.utah.edu.
authors: Rochelle R
authors: RR
authors: Smits-Seemann
authors: Department of Preventive Medicine and Community Health, University of Texas Medical Branch, Galveston, TX, USA.
authors: Sapna
authors: S
authors: Kaul
authors: Utah Department of Health, Salt Lake City, UT, USA.
authors: Eduardo R
authors: ER
authors: Zamora
authors: Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, 2000 Circle of Hope, Rm 4124, Salt Lake City, UT, 84112, USA.|Department of Family and Preventive Medicine, University of Utah, Salt Lake City, UT, USA.
authors: Yelena P
authors: YP
authors: Wu
authors: Department of Pediatrics, Division of Pediatric Hematology/Oncology, University of Utah, Salt Lake City, UT, USA.|Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, 2000 Circle of Hope, Rm 4124, Salt Lake City, UT, 84112, USA.
authors: Anne C
authors: AC
authors: Kirchhoff
mesh_terms: D000293:Adolescent; D000328:Adult; D000359:Aftercare; D002648:Child; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000523:psychology*; D017741:Survivors / Q000523:psychology*; D055815:Young Adult
keywords: AYA cancer; Barriers to care; Risk-based follow-up care; Survivorship