Abstract

Adolescents and young adults (AYA) with cancer do not fit neatly into pediatric or older adult oncology care settings. Recent efforts have led to the development of psychosocial interventions for AYAs, but studies show AYAs demonstrate low levels of engagement in psychosocial services. The AYA Care Plan is one of the only web-based tools providing a personalized, psychosocial resource that addresses unmet needs for AYAs in active treatment and post-treatment survivorship. The current study aims to assess the usability and utility of the AYA Care Plan and identify opportunities for improvement. Clinic staff administered an online distress and needs assessment to AYA patients with cancer at outpatient oncology clinics. Personalized care plans were sent to participants on the basis of their responses. A total of 11 AYAs between the ages 18 and 39 years, with a mean age of 31.64 years, then completed qualitative interviews about their experiences. Thematic analysis was used to identify themes on the AYA Care Plan. A majority of participants reported positive usability features. Half of the participants reported using their care plan to make health care decisions. One person indicated not finding the resources helpful, and the other half of participants reported not engaging with the care plan. Participants also offered suggestions for improvement. The AYA Care Plan appears to be a useful psychosocial intervention for some AYAs with cancer. Future research should continue to examine the AYA Care Plan's usability and utility, and specify when, how, and for whom the AYA Care Plan is useful.

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