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Psychosocial risk, symptom burden, and concerns in families affected by childhood cancer

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Abstract

Purpose

The revised Psychosocial Assessment Tool (PATrev) is a common family-level risk-based screening tool for pediatric oncology that has gained support for its ability to predict, at diagnosis, the degree of psychosocial support a family may require throughout the treatment trajectory. However, ongoing screening for symptoms and concerns (e.g., feeling alone, understanding treatment) remains underutilized. Resource limitations necessitate triaging and intervention based on need and risk. Given the widespread use of the PATrev, we sought to explore the association between family psychosocial risk, symptom burden (as measured by the revised Edmonton Symptom Assessment System (ESAS-r)), and concerns (as measured by the Canadian Problem Checklist (CPC)).

Methods

Families (n = 87) with children ≤ 18 years of age (M = 11.72, male: 62.1%) on or off treatment for cancer were recruited from the Alberta Children’s Hospital. One parent from each family completed the PATrev and the CPC. Participants 8–18 years of age completed the ESAS-r. Results.

Risk category (universal/low risk = 67.8%, targeted/intermediate risk = 26.4%, clinical/high risk = 5.7%) predicted symptom burden (F[2, 63.07] = 4.57, p = .014) and concerns (F[2, 82.06] = 16.79, p < .001), such that universal risk was associated with significantly lower symptom burden and fewer concerns.

Conclusion

Family psychosocial risk is associated with cross-sectionally identified concerns and symptom burden, suggesting that resources might be prioritized for families with the greatest predicted need. Future research should evaluate the predictive validity of the PATrev to identify longitudinal concerns and symptom burden throughout the cancer trajectory.

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Availability of data and material

Data can be made available upon request to the corresponding author.

Code availability

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Acknowledgements

The authors would like to recognize Tiffany Rent, RN, Clinical Nurse Specialist, for her help and contributions to participant recruitment.

Funding

This project was sponsored by the Alberta Children’s Hospital Foundation grant 2010–017.

Author information

Authors and Affiliations

  1. Department of Psychology, University of Calgary, Calgary, Canada

    K. Brooke Russell & Michaela Patton

  2. Faculty of Medicine & Dentistry, University of Alberta, Edmonton, Canada

    Courtney Tromburg

  3. Department of Medical Science, Cumming School of Medicine, University of Calgary, Calgary, Canada

    Hailey Zwicker

  4. Departments of Oncology and Paediatrics, Cumming School of Medicine, University of Calgary, Calgary, Canada

    Gregory M. T. Guilcher

  5. Alberta Children’s Hospital Research Institute, Calgary, Canada

    Gregory M. T. Guilcher

  6. Haematology, Oncology and Transplant Program, Alberta Children’s Hospital, Calgary, Canada

    Gregory M. T. Guilcher & Fiona Schulte

  7. Department of Psychosocial Oncology, Tom Baker Cancer Centre, Calgary, Canada

    Barry D. Bultz

  8. Department of Oncology, Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada

    Barry D. Bultz

  9. Department of Oncology, Division of Psychosocial Oncology, University of Calgary, Calgary, Canada

    Fiona Schulte

Authors
  1. K. Brooke Russell
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  2. Michaela Patton
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  6. Barry D. Bultz
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  7. Fiona Schulte
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Contributions

All the authors contributed to the study conception and design. Material preparation and data collection and analysis were performed by Brooke Russell and Fiona Schulte. The first draft of the manuscript was written by Brooke Russell and Fiona Schulte and all the authors commented on previous versions of the manuscript. All the authors read and approved the final manuscript.

Corresponding author

Correspondence to Fiona Schulte.

Ethics declarations

Ethics approval

Ethics approval was obtained from the Health Research Ethics Board of Alberta: Cancer Committee (HREBA.CC-16–0274).

Conflict of interest

The authors declare no competing interests.

Consent to participate

Informed written consent was obtained from all participating parents and patients who were 18 years of age. Verbal assent was obtained from participating children and adolescents who were 8–18 years of age.

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Not applicable.

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Russell, K.B., Patton, M., Tromburg, C. et al. Psychosocial risk, symptom burden, and concerns in families affected by childhood cancer. Support Care Cancer 30, 2283–2292 (2022). https://doi.org/10.1007/s00520-021-06646-3

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  • DOI: https://doi.org/10.1007/s00520-021-06646-3

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