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21-01-2022

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

Authors: Chantel Cacciotti, Lydia Larocque Chevalier, Cheryl Medeiros-Nancarrow, Christopher Recklitis, Tabitha M. Cooney

Published in: Journal of Cancer Survivorship | Issue 5/2023

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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Title: The effect of pediatric central nervous system tumors on identity in young adult survivors: a project REACH study
Authors: Chantel Cacciotti
Lydia Larocque Chevalier
Cheryl Medeiros-Nancarrow
Christopher Recklitis
Tabitha M. Cooney
Publication date: 21-01-2022
Publisher: Springer US
Published in: Journal of Cancer Survivorship / Issue 5/2023
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-022-01172-5

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Abstract

Purpose

Methods

Results

Implications for Cancer Survivors

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