Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.
Department of Health Policy and Biostatistics, University of Toronto, Toronto, Canada.
J Adolesc Young Adult Oncol. 2021 Aug;10(4):432-442. doi: 10.1089/jayao.2020.0097. Epub 2020 Sep 15.
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.
目的是回顾青少年和年轻成人（AYA）癌症幸存者（18-34 岁）在过渡到癌症生存者期间所经历的主要挑战，并了解他们对改善护理的建议。进行了一项全国性调查，以确定癌症治疗后 1-3 年的随访护理经验。该调查包括对受访者的开放性问题，以添加重要主题和更深入的细节。本研究分析了 AYA 受访者在面临的主要挑战及其对改善护理的建议方面的开放性问题。在 575 名 AYA 调查受访者中，497 名（86.4％）对主要挑战发表了评论。21 人表示他们没有遇到挑战。在报告有挑战的人中，有 209 人（43.9％）提到了一个挑战，267 人（56.1％）确定了多个挑战。共有 955 个挑战被确定，最常提到的是身体（ = 462，48.4％）和心理（ = 234，24.5％）。共有 391 名幸存者共提出了 679 条关于改善护理的建议，其中大多数（ = 248，69.4％）提出了不止一条建议。最常提到的建议包括信息/沟通（ = 191，29.8％），提出了许多希望获取信息的主题，以及获得治疗后治疗/服务（ = 164，25.5％），例如咨询、物理治疗和职业治疗。首要主题是，“我需要适合我的随访护理。” AYA 癌症幸存者在治疗后具有多样性，并面临独特的挑战，这些挑战可能会对其产生终身影响，并阻碍他们的康复。这些幸存者强烈推荐个性化的随访护理。
