Adolescent and young adult perspectives on challenges and improvements to cancer survivorship care: How are we doing?

Purpose: 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. Methods: 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. Results: 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 (n = 462, 48.4%) and psychological (n = 234, 24.5%). A total of 391 survivors wrote 679 suggestions about improvements in care with the majority (n = 248, 69.4%) offering more than one. The most frequently cited suggestions included information/communication (n = 191, 29.8%), naming a range of topics for which information was desired, and access to post-treatment therapies/services (n = 164, 25.5%) such as counseling, physiotherapy, and occupational therapy. The overarching theme was, ‘‘I need follow-up care that fits me.’’ Conclusions: 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.