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Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors

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Abstract

Purpose

As survival rates of adolescent and young adult (AYA) cancer patients increase, a growing number of AYA cancer survivors need follow-up care. However, there is little research on their preferences for follow-up care. We aimed to (1) describe AYA cancer survivors’ preferences for the organization and content of follow-up care, (2) describe their preferences for different models of follow-up, and (3) investigate clinical and sociodemographic characteristics associated with preferences for the different models.

Methods

AYA cancer survivors (diagnosed with cancer at age 16–25 years; ≥5 years after diagnosis) were identified through the Cancer Registry Zurich and Zug. Survivors completed a questionnaire on follow-up attendance, preferences for organizational aspects of follow-up care (what is important during follow-up, what should be included during appointments, what specialists should be involved, location), models of follow-up (telephone/questionnaire, general practitioner (GP), pediatric oncologist, medical oncologist, multidisciplinary team), and sociodemographic characteristics. Information on tumor and treatment was available through the Cancer Registry Zurich and Zug.

Results

Of 389 contacted survivors, 160 (41.1 %) participated and 92 (57.5 %) reported still attending follow-up. Medical aspects of follow-up care were more important than general aspects (p < 0.001). Among different organizational models, follow-up by a medical oncologist was rated higher than all other models (p = 0.002). Non-attenders of follow-up rated GP-led follow-up significantly higher than attenders (p = 0.001).

Conclusion

Swiss AYA cancer survivors valued medical content of follow-up and showed a preference for medical oncologist-led follow-up. Implementation of different models of follow-up care might improve accessibility and attendance among AYA cancer survivors.

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Acknowledgments

We thank all survivors for participating in our survey, the Cancer Registry Zurich and Zug for its support, and the members of the study team of the Swiss Childhood Cancer Survivor Study (Philip Läuppi, Anna Hohn, Zina Heg-Bachar).

This article is based on a revised version of the master thesis “Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors” that has been submitted to the Faculty of Humanities and Social Sciences at the University of Lucerne in 2015. The master thesis has been prepared by Salome Christen under the supervision of Gisela Michel and Corina S. Rueegg.

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Authors and Affiliations

  1. Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002, Lucerne, Switzerland

    Salome Christen, Janine Vetsch, Luzius Mader, Corina S. Rueegg & Gisela Michel

  2. Cancer Registry Zurich and Zug, Institute of Surgical Pathology, University Hospital Zurich and Epidemiology, Biostatistics and Prevention Institute, University Zurich, Vogelsangstrasse 10, 8091, Zurich, Switzerland

    Silvia Dehler & Dimitri Korol

  3. Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012, Bern, Switzerland

    Claudia Kuehni & Gisela Michel

Authors
  1. Salome Christen
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  2. Janine Vetsch
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  3. Luzius Mader
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  4. Silvia Dehler
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  5. Dimitri Korol
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  6. Claudia Kuehni
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  7. Corina S. Rueegg
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  8. Gisela Michel
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Corresponding author

Correspondence to Gisela Michel.

Ethics declarations

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.

Conflict of Interest

The authors declare that they have no conflict of interest.

Informed consent

Informed consent was obtained from all individual participants for whom identifying information is included in this article.

Funding

This work was supported by the Swiss National Science Foundation (Ambizione grant PZ00P3_121682/1 and PZ00P3–141,722 to GM; grant 100019_153268/1) and the Swiss Cancer League (KFS-02631-08-2010).

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Christen, S., Vetsch, J., Mader, L. et al. Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors. Support Care Cancer 24, 3425–3436 (2016). https://doi.org/10.1007/s00520-016-3157-7

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  • DOI: https://doi.org/10.1007/s00520-016-3157-7

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