Adolescent and Young Adult Perspectives on Challenges and Improvements to Cancer Survivorship Care: How Are We Doing?

The purpose was to review main challenges experienced by adolescent and young adult (AYA) cancer survivors (18-34 years) during transition to survivorship and their suggestions regarding improvements needed in care. A national survey was conducted to identify experiences with follow-up care 1-3 years after cancer treatment. The survey included open-ended questions for respondents to add topics of importance and details for deeper insight. This study presents analysis of open-ended questions about main challenge faced by AYA respondents and their suggestions for improvements in care. Of 575 AYA survey respondents, 497 (86.4%) commented regarding main challenges. Twenty-one indicated that they had no challenges. Of those reporting challenges, 209 (43.9%) named one challenge, 267 (56.1%) identified more than one. In total, 955 challenges were identified with the most frequently cited being physical ( = 462, 48.4%) and psychological ( = 234, 24.5%). A total of 391 survivors wrote 679 suggestions about improvements in care with the majority ( = 248, 69.4%) offering more than one. The most frequently cited suggestions included information/communication ( = 191, 29.8%), naming a range of topics for which information was desired, and access to post-treatment therapies/services ( = 164, 25.5%) such as counseling, physiotherapy, and occupational therapy. The overarching theme was, "I need follow-up care that fits me." AYA cancer survivors are diverse and face unique challenges following treatment, which can have life-long implications and impede their recovery. Personalized follow-up care is highly recommended by these survivors.