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Survivorship needs of adolescent and young adult cancer survivors: a concept mapping analysis

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Abstract

Purpose

Adolescents and young adults (AYAs) with cancer are known to have complex medical and psychosocial needs throughout treatment; however, information is lacking about the challenges AYA survivors face after treatment has ended. Focus groups were conducted using a concept mapping framework to better understand the most important issues these patients face in transitioning to survivorship and how prepared they felt to face them.

Methods

AYAs diagnosed between 18 and 39 years old and at least 2 years post-treatment participated in one of six focus groups based on age group and follow-up status. Using a concept mapping design, participants provided important issues during the transition to survivorship and appraised them on three core areas of interest.

Results

Analyses revealed salient themes shared across age and follow-up group status, particularly related to the psychosocial, emotional, and cognitive effects of treatment. Differential concerns included those related to patients’ developmental concerns—namely, finding a new identity, financial burden of treatment, and fertility concerns after treatment.

Conclusions

AYA cancer survivors continue to have a myriad of issues beyond the immediate treatment phase. Despite a complex list of challenges, these issues largely remained unaddressed by their oncology provider and left patients feeling overwhelmingly ill-prepared to manage their transition to survivorship.

Implications for Cancer Survivors

AYA cancer survivors have many unaddressed concerns as they transition out of active cancer treatment, largely related to developmental issues they are facing. Survivorship care for these patients would benefit from care planning that takes these unique concerns into account.

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Funding

This study was funded by the American Cancer Society (Institutional Research Grant #IRG-02-197-09).

Author information

Authors and Affiliations

  1. Department of Psychology, Roswell Park Comprehensive Cancer Center, Buffalo, NY, 14263, USA

    Jennifer A. Hydeman

  2. Survivorship and Supportive Care, Roswell Park Comprehensive Cancer Center, Buffalo, NY, 14263, USA

    Odochi C. Uwazurike & Elizabeth I. Adeyemi

  3. Alabama College of Osteopathic Medicine, Dothan, AL, USA

    Elizabeth I. Adeyemi

  4. Pediatric Hematology Oncology, Roswell Park Comprehensive Cancer Center, Buffalo, NY, 14263, USA

    Lynda K. Beaupin

  5. Department of Hematology/Oncology, John’s Hopkins All Children’s Hospital, St. Petersburg, FL, USA

    Lynda K. Beaupin

Authors
  1. Jennifer A. Hydeman
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  2. Odochi C. Uwazurike
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  3. Elizabeth I. Adeyemi
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  4. Lynda K. Beaupin
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Corresponding author

Correspondence to Jennifer A. Hydeman.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Appendix

Appendix

Table 2 Concept map bridging and stress values
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Table 3 Mean appraisal ratings for all groups on three domains
Full size table

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Hydeman, J.A., Uwazurike, O.C., Adeyemi, E.I. et al. Survivorship needs of adolescent and young adult cancer survivors: a concept mapping analysis. J Cancer Surviv 13, 34–42 (2019). https://doi.org/10.1007/s11764-018-0725-5

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  • DOI: https://doi.org/10.1007/s11764-018-0725-5

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