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Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls

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Abstract

Purpose

For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on “best” approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives.

Methods

Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0–7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality.

Results

A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as “best” approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls.

Conclusion

Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

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Data availability

Deidentified qualitative data can be made available to share with interested parties who wish to review the data or conduct further analyses. Please reach out to the corresponding author with inquiries.

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Acknowledgements

The authors acknowledge Dr. Suzanne Gronemeyer for her leadership of the Pediatric Oncology Education (POE) program, which supported Dr. Zalud’s internship. The authors also thank Dr. Lisa Clark for providing critical review of the interview guide from the perspective of a grief and bereavement psychologist. Additionally, the authors thank Ms. Cameka Woods and Ms. Melanie Gattas for their assistance with collecting interview data. Most importantly, the authors express gratitude for the patients, parents, and clinicians who participated in this study.

Funding

This work was supported by the Pediatric Oncology Education (POE) program through a National Cancer Institute grant (R25 CA023944). Dr. Kaye also receives salary support from the National Cancer Institute (K08CA266935). Additionally, this work was supported in part by ALSAC. There is no other relevant funding support to disclose. None of the funders/sponsors participated in the work.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Washington University, St. Louis, MO, USA

    Kristina Zalud

  2. Department of Oncology, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Griffin Collins, Justin N. Baker & Erica C. Kaye

  3. Department of Pediatrics, Stanford School of Medicine, Palo Alto, CA, USA

    Justin N. Baker

  4. Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, USA

    Jennifer W. Mack

  5. Department of Pediatrics, Boston Children’s Hospital, Boston, MA, USA

    Jennifer W. Mack

  6. Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Mail Stop 1121, Memphis, TN, 38105, USA

    Erica C. Kaye

Authors
  1. Kristina Zalud
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  2. Griffin Collins
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  3. Justin N. Baker
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  4. Jennifer W. Mack
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  5. Erica C. Kaye
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Contributions

All authors participated in conceptualizing this study. K.Z. analyzed the data and drafted the original manuscript and tables. G.C. analyzed the data and critically reviewed and revised the manuscript. J.N.B. assisted with data collection, synthesis of findings, and critically reviewed and revised the manuscript. J.W.M. helped to conceptualize the analysis, assisted with synthesis of findings, and critically reviewed and revised the manuscript. E.C.K. led study conceptualization, collected data, supervised data analysis and synthesis of findings, drafted the original manuscript and tables, and critically reviewed and revised the manuscript. All authors reviewed and approved the final version of the manuscript.

Corresponding author

Correspondence to Erica C. Kaye.

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The authors declare no competing interests.

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Zalud, K., Collins, G., Baker, J.N. et al. Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls. Support Care Cancer 32, 341 (2024). https://doi.org/10.1007/s00520-024-08539-7

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