Barriers to survivorship care for adolescent and young adult cancer survivors: perspectives of survivors and cancer specialists

Abstract

Background Adolescent and young adult (AYA) cancer survivors have complex long-term survivorship needs beyond cancer recurrence surveillance. Although survivor concerns and healthcare provider perspectives have been reported separately, few studies have evaluated both within the same healthcare setting. We conducted complementary surveys of AYA cancer survivors and physicians to characterize survivorship concerns, barriers to long-term follow-up (LTFU), and telemedicine preferences. Methods This single-center, cross-sectional study included questionnaire surveys of 98 AYA cancer survivors receiving outpatient follow-up after cancer treatment and 45 physicians involved in AYA survivorship care at the National Cancer Center Hospital, Japan. Survivors were surveyed regarding LTFU, survivorship concerns, and telemedicine preferences, and physicians regarding LTFU practices, referral barriers, and AYA-specific challenges. Associations between survivor characteristics and telemedicine preference were explored using univariable analyses. Results Among survivors, 84 of 98 (85.7%) considered LTFU necessary, and 51 (52.0%) reported difficulty attending follow-up because of school or work commitments. Of 91 survivors evaluable for telemedicine preference, 69 (75.8%) were likely or somewhat likely to use at least one telemedicine service. Among all 98 survivors, frequently selected telemedicine topics included disease information (45.9%), daily activities (31.6%), anxiety and worry (30.6% each), financial issues (29.6%), and work- or school-related concerns (27.6%). No demographic, clinical, treatment-related or healthcare utilization factors were significantly associated with telemedicine preference. Among physicians, 13 of 44 (29.5%) reported an established departmental LTFU policy. Follow-up at the treating cancer center was supported by 76.2% for survivors at high risk of recurrence but by only 21.4% for all AYA survivors. Major barriers to coordinated care included difficulty identifying hospitals providing cancer-specific LTFU (73.8%) or multidisciplinary care (71.4%). Physicians identified reproductive medicine and life events as major AYA-specific challenges and mental health, endocrine disorders, and sexual and reproductive health as areas requiring additional support. Conclusions AYA cancer survivors reported substantial survivorship concerns, whereas physicians identified barriers to coordinated multidisciplinary care. Telemedicine was of interest to many survivors and warrants prospective evaluation as a potential component of multidisciplinary survivorship care.