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

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Abstract

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.

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Acknowledgments

This study is funded by a grant from the Juravinski Cancer Centre Foundation. Elena Tsangaris received a scholar award from the McMaster Child Health Research Institute. Anne Klassen holds a Canadian Institutes of Health Research Mid-Career Award.

Conflict of interest

There is no conflict of interest to declare.

Author information

Authors and Affiliations

  1. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada

    Elena Tsangaris

  2. Department of Pediatrics, McMaster University, Room HSC 3N27, 1200 Main Street West, Hamilton, Ontario, L8S 4J9, Canada

    Jessica Johnson, Ronald Barr & Anne Klassen

  3. Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust & Department of Children’s Nursing, London South Bank University, London, England

    Rachel Taylor

  4. National Cancer Research Institute, Teenage & Young Adult Clinical Studies Group, University College Hospitals NHS Foundation Trust, London, England

    Lorna Fern

  5. School of Nursing, McMaster University, Hamilton, Ontario, Canada

    Denise Bryant-Lukosius

  6. Department of Oncology, McMaster University and Juravinski Cancer Center, Hamilton, Ontario, Canada

    Graeme Fraser

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  1. Elena Tsangaris
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  2. Jessica Johnson
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Correspondence to Anne Klassen.

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Tsangaris, E., Johnson, J., Taylor, R. et al. Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review. Support Care Cancer 22, 947–959 (2014). https://doi.org/10.1007/s00520-013-2053-7

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  • DOI: https://doi.org/10.1007/s00520-013-2053-7

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