Active Treatment to Survivorship Care: A Mixed-Methods Study Exploring Resource Needs and Preferences of Young Adult Cancer Survivors in Transition

Abstract

Purpose:

The purpose of this study was to identify resource needs and preferences of young adult cancer survivors (YAs) during the transition from active treatment to survivorship care to inform tailored care tools to support YAs during this period.

Methods:

A mixed methods study following a sequential explanatory approach was conducted among YAs between the ages of 15 and 39. Online surveys were distributed to assess participant information and resource needs, and responses were further explored during virtual focus group and interview discussions. Frequencies and proportions were calculated to identify quantitative resource needs, and a descriptive qualitative approach was used to gather and analyze qualitative data.

Results:

Thirty-one participants completed the online surveys, and 27 participated in qualitative data collection. The top resource needs identified in the surveys and discussed in focus groups and interviews were (1) fear of recurrence, (2) sleep and fatigue, (3) anxiety, (4) nutrition, (5) physical activity, and (6) finances. Emergent themes identified during transcript analyses included the need for (1) tailored, customizable resources, (2) connection with other survivors, (3) tools to guide conversations about cancer, (4) clarity in what to expect during treatment and survivorship, and (5) consistent and equitable care in YA oncology.

Conclusions:

Participants identified six important information needs in addition to an overarching need for tailored support and equitable distribution of resources while transitioning into early survivorship. Thus, tailored interventions are needed to enhance the distribution of YA-centered resources, improve equity in YA cancer care, and connect YAs with peer survivors.