Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review

Purpose In Canada, adolescent survivors of cancer are treated mainly at pediatric centers, while young adults are treated at adult centers. Both care environments are reported as being inappropriate and do not fulfill the needs of adolescents and young adults (AYA). The purpose of this study was to investigate supportive care needs (SCN) of AYA survivors of cancer. Methods Qualitative description and a systematic literature review (SLR) were used to explore this topic. For the qualitative study, a purposive sample of AYA survivors (15 to 25 years of age) was recruited from a pediatric and an adult cancer program in one area of Ontario, Canada. Interviews were conducted, recorded digitally, and transcribed verbatim. Line-by-line coding was used to establish themes and subthemes. The SLR entailed a systematic search of electronic databases from their date of inception to October 2011. Two screeners worked independently to screen abstracts, titles, and relevant full-text articles. Findings from both studies were synthesized. Results Twenty interviews were conducted for the qualitative study. For the SLR, 760 citations were identified, of which 12 met inclusion criteria. The most commonly reported SCN, from both studies, were social needs, information sharing and communication needs, and service provision needs. Conclusion Comparison of findings from both studies reveals many overlapping (e.g., entertainment for teens) and novel (e.g., collaboration) themes. Study results will be used to inform the potential development of a comprehensive healthcare program for AYA.