Perspectives of Canadian adolescent and young adult (AYA) cancer survivors in designing a regional AYA survivorship program
摘要
Adolescents and young adults (AYA, ages 15–39 years) with cancer have distinct survivorship needs due to the unique physical, psychological, and social disruptions at this age. We sought to identify key program components of an AYA survivorship program and how to best implement these requirements.
MethodsAn anonymous electronic survey was sent through the institutional electronic health record to AYA cancer survivors who completed treatment between 2015 and 2020 at the Ottawa Hospital (Ottawa, Canada). Demographic data were analyzed using descriptive statistics. Quantitative data from Likert scales were presented as frequency distributions of responses. Ranking items were sorted according to weighted mean. Qualitative data from open-ended responses were analyzed using content analysis.
ResultsIn total, 85 respondents (response rate 24.9%) completed the survey. Respondents were predominantly female (79.5%), diagnosed in 2020 (25%) or 2019 (20.8%), employed full-time (61.1%), married (62.5%), and had children at diagnosis (52.8%). The top three priorities were (1) preventing new recurrences, (2) reducing anxiety and improving mental health, and (3) feeling “normal.” Most respondents (78.3%) indicated that they would engage with a formal program, with a preference for electronic communication tools (86.2%). Respondents preferred a dedicated oncology provider (64.7%). Thematic analysis suggested that a focus on mental health would enhance support for survivors and increase utilization of the program.
ConclusionsAYA survivorship programming in our region requires the integration of mental health supports as a key resource component to address patient-identified needs and increase program utilization.
Implications for Cancer SurvivorsThese findings highlight the need for survivorship programs to integrate robust mental health supports. This will increase program utilization and facilitate access to screening and late effects monitoring.