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A qualitative study on the healthcare experiences of adolescents and young adults (AYA) with an uncertain or poor cancer prognosis

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Abstract

Purpose

Treatment advancements have improved life expectancy for adolescents and young adults (AYAs) with an uncertain and/or poor cancer prognosis (UPCP) and change clinical practice. This improved survival requires a different approach and specific expertise to meet the needs of this group. The aim of this study is to explore the health care experiences of AYAs with a UPCP.

Methods

We conducted a multicenter qualitative study using semi-structured interviews and elements of the grounded theory by Corbin and Strauss.

Results

Interviews were conducted with 46 AYAs with a UPCP. They were on average 33.4 years old (age range 23–44), and most of them were woman (63%). Additionally, five AYAs with a UPCP participated as AYA research partners in two focus groups. They were on average 31.8 years old and four of them were woman. AYAs with a UPCP reported four pillars for a satisfied healthcare experience: (1) trust, (2) tailored communication, (3) holistic empathic open attitude, and (4) care being offered (pro-)actively. They reported both optimal and suboptimal experiences about distrust based on a delay in diagnostic trajectory, lack of tailored communication and discussion of sensitive topics, preference for a holistic approach, and struggles with finding the way to get additional healthcare support.

Conclusion

For AYAs with a UPCP, it is important that both age-specific issues and issues related to the UPCP are understood and addressed; however, this seems not yet optimally implemented in clinical practice. This emphasizes the importance of providing this patient group with tailored care incorporating both aspects. Healthcare professionals need to be supported with training and tools to understand the healthcare needs of AYAs with a UPCP. AYAs can be empowered to take more control over their own healthcare needs

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Funding

OH and VWGB are supported by a grant from the Netherlands Organisation for Scientific Research [grant number VIDI198.007].

Author information

Authors and Affiliations

  1. Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands

    Vivian W.G. Burgers, Milou J.P. Reuvers & Olga Husson

  2. Department of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands

    Vivian W.G. Burgers, Milou J.P. Reuvers, Marleen Kok, Olga Husson & Winette T.A. van der Graaf

  3. Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, the Netherlands

    Vivian W.G. Burgers, Milou J.P. Reuvers & Winette T.A. van der Graaf

  4. Department of Neurology, Leiden University Medical Centre, Leiden, the Netherlands

    Martin J.B. Taphoorn

  5. Department of Neurology, Haaglanden Medical Center, The Hague, the Netherlands

    Martin J.B. Taphoorn

  6. Division of Tumor Biology & Immunology, Netherlands Cancer Institute, Amsterdam, the Netherlands

    Marleen Kok

  7. Department of Thoracic Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, Netherlands

    Adrianus J de Langen

  8. Department of Neurology, Erasmus University Medical Center, Rotterdam, the Netherlands

    Martin J. van den Bent

  9. AYA Research Partner, Amsterdam, the Netherlands

    Simone A.M.M. Frissen, Niels C.G.L. Harthoorn & Annemiek Dickhout

  10. Internal Medicine, Division Medical Oncology, Maastricht University Medical Center, Maastricht, the Netherlands

    Annemiek Dickhout

  11. GROW-School of Oncology and Reproduction, Maastricht University Medical Center, Maastricht, the Netherlands

    Annemiek Dickhout

  12. Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, the Netherlands

    Olga Husson

Authors
  1. Vivian W.G. Burgers
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  2. Milou J.P. Reuvers
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  4. Marleen Kok
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  6. Martin J. van den Bent
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  7. Simone A.M.M. Frissen
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  8. Niels C.G.L. Harthoorn
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  9. Annemiek Dickhout
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  11. Winette T.A. van der Graaf
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Contributions

Conceptualisation: VB, OH, WG. Data collection: VB, MR. Analysing: VB, MR, AD, SF, NH, OH, WG. Writing and manuscript preparation: VB. Review and editing by all authors. Supervision: OH, WG.

Corresponding author

Correspondence to Vivian W.G. Burgers.

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The authors declare no competing interests.

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Olga Husson and Winette T.A. van der Graaf have joint contribution as last authors.

Appendices

Appendix 1

Table 3 COREQ checklist
Full size table

Appendix 2

Table 4 GRIPP-2 checklist
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Appendix 3

Table 5 Action points and helpful examples for clinical practice
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Burgers, V.W., Reuvers, M.J., Taphoorn, M.J. et al. A qualitative study on the healthcare experiences of adolescents and young adults (AYA) with an uncertain or poor cancer prognosis. Support Care Cancer 31, 721 (2023). https://doi.org/10.1007/s00520-023-08149-9

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