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The effect of pediatric central nervous system tumors on identity in young adult survivors: a project REACH study

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Abstract

Purpose

Of all childhood cancers, adult survivors of pediatric central nervous system (CNS) tumors are at the highest risk for late mortality as well as neurocognitive, physical, and psychosocial late effects. Their identity with cancer survivorship, the relationship of their identity to health outcomes, and how their identity differs from other childhood cancer survivors is poorly understood.

Methods

A total of 127 young adults previously treated for pediatric CNS tumors enrolled in Project REACH, a locally-treated childhood cancer survivor cohort. Participants completed self-report measures on the effects of cancer on identity, someone who had cancer, victim and survivor identity, frequency of thoughts of diagnosis, and health outcomes.

Results

The majority of participants identified as a survivor (83%). Survivor identity was linked to diagnosis and treatment but not health outcomes. A minority (9%) endorsed a victim identity, and they were more likely to have poorer mental health (p = 0.03) and depression (p = 0.04) than non-victims. Participants who reported a stronger effect of cancer on their identity also had poorer mental health (p = 0.005). A higher frequency of diagnosis-related thoughts was associated with significantly poorer mental health (p < 0.001), more severe anxiety (p = 0.008), depression (p < 0.001), and neurocognitive impairments (p < 0.01). Those who experienced relapse, radiation, and/or chemotherapy were more likely to identify as someone who had cancer, independent of diagnosis.

Implications for Cancer Survivors

Our findings suggest the relationships previously reported between identity and sociodemographic, treatment, and health outcomes after adult and pediatric non-CNS cancers cannot be generalized to pediatric CNS tumors. Understanding the unique features of how this population identifies is important for patient-centered care.

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Data availability

The data that supports the findings of this study are available from the corresponding author upon request.

Code availability

Not applicable.

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Acknowledgements

The authors would like to acknowledge the survivors, families, and health care providers who took the time to participate in this work.

Funding

Project REACH is supported by generous donations from Swim Across America.

Author information

Authors and Affiliations

  1. Dana Farber/Boston Children’s Cancer and Blood Disorder Center, Boston, MA, USA

    Chantel Cacciotti & Tabitha M. Cooney

  2. Division of Pediatric Hematology/Oncology, Western University, London, ON, USA

    Chantel Cacciotti

  3. Department of Pediatric Hematology/Oncology, London Health Sciences, 800 Commissioners Road East, Rm B1-114, London, ON, N6A 5W9, USA

    Chantel Cacciotti

  4. Perini Family Survivors’ Center, Dana-Farber Cancer Institute/Harvard Medical School, Boston, MA, USA

    Lydia Larocque Chevalier, Cheryl Medeiros-Nancarrow & Christopher Recklitis

Authors
  1. Chantel Cacciotti
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  2. Lydia Larocque Chevalier
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  3. Cheryl Medeiros-Nancarrow
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  4. Christopher Recklitis
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  5. Tabitha M. Cooney
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Contributions

All authors contributed to the study’s conception and design. Material preparation, data collection, and analysis were performed by Chantel Cacciotti and Lydia Larocque Chevalier. The first draft of the manuscript was written by Chantel Cacciotti, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Chantel Cacciotti.

Ethics declarations

Ethics approval

Project REACH was approved by our center’s Institutional Review Board.

Consent to participate

Informed consent was obtained from all individuals to participate in Project REACH.

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Not applicable.

Conflict of interest

The authors declare no competing interests.

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Cacciotti, C., Chevalier, L.L., Medeiros-Nancarrow, C. et al. The effect of pediatric central nervous system tumors on identity in young adult survivors: a project REACH study. J Cancer Surviv 17, 1347–1358 (2023). https://doi.org/10.1007/s11764-022-01172-5

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  • DOI: https://doi.org/10.1007/s11764-022-01172-5

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