What Are the Unmet Needs and Care Experiences of Adolescents and Young Adults with Cancer? A Systematic Review

Abstract

Purpose: To assess what is currently known about unmet needs and care experiences of adolescents and young adults (AYAs) with cancer, identify gaps in the research literature, and highlight potential areas for improvement in future research.

Methods: Medline, PsycINFO, CINAHL, and EMBASE databases were searched to identify relevant studies from 1990 to July 2015. Eligible articles included self-reported care experiences or unmet needs of cancer patients aged between 15 and 30 years in the period between symptom onset and 2 years post-treatment. Qualitative and quantitative designs were included.

Results: Forty-five articles from 39 studies (23 qualitative, 12 quantitative, and 4 mixed methods) were rated as "adequate" or "good" quality and reviewed. The majority included any cancer diagnoses and none was longitudinal. There was considerable variation in age ranges and time since diagnosis between studies. Only two studies used standardized survey tools, with both tools validated on adult populations. The most common areas assessed for care experiences and needs were information/communication and fertility. In addition, care experience studies commonly examined clinical expertise and age-appropriate settings, while unmet needs studies reported on emotional support and peer interaction.

Conclusion: Findings highlight the need for age-appropriate information and treatment facilities, access to emotional support services, and contact with peers. Fertility information and services are a priority issue for this group. Future research would benefit from a consistent definition of the AYA age range, increased used of standardized scales validated with this population, and longitudinal designs to assess changes over time.

Keywords: psychosocial review; standard of care; supportive care.