Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words

Abstract

Purpose: Categorization of the needs of AYA cancer survivors is primarily based on quantitative analyses of epidemiological and observational research. The present study classified the phenomenological experiences of AYA survivors based on their own language.

Methods: A systematic approach for selecting qualitative studies of unmet needs in AYA cancer survivors was used. Following selection based on quality, survivor statements were entered verbatim and thematic analysis was conducted using NVivo qualitative research software.

Results: A total of 1993 AYA cancer survivors (post-treatment) were included in 58 studies (78% individual interviews). Mean age was 27.6 with an average of 8.6 years post-primary treatment. The organizational framework reported in this study was based on a heterogeneous group of cancer types. Thirteen themes including symptoms, function, reproductive health, emotional well-being, health management, health care system, social interaction, romantic relationships, cancer disclosure, normalcy, career development and employment, and school and fiscal concerns were identified. Forty-eight subthemes were also identified covering such areas as fertility, integrative health services, advice for cancer disclosure, family interaction, and insurance challenges.

Conclusion: Direct analysis of text identified many common unmet needs similarly reported in the quantitative literature. The phenomenological data also provided a breakdown of unmet needs into subthemes or elements of unmet needs.

Implications for cancer survivors: This information can help form the basis for a personalized, valid, and reliable evaluation tool of the range of unmet needs in AYA survivors.

Keywords: Adolescent and young adult; Cancer survivorship; Mixed methods research; Needs; Qualitative.