Psychological outcomes in long-term survivors of childhood brain cancer: a report from the childhood cancer survivor study

J Clin Oncol. 2004 Mar 15;22(6):999-1006. doi: 10.1200/JCO.2004.06.148.


Purpose: To evaluate and compare psychological outcomes in long-term survivors of pediatric brain cancer and siblings of childhood cancer survivors, and to identify significant correlates of psychological distress.

Methods: One thousand one hundred one adult survivors of childhood brain cancer and 2,817 siblings completed a long-term follow-up questionnaire allowing assessment of symptoms associated with depression, somatization, and anxiety, as well as demographic, health, and medical information.

Results: A large majority of siblings and survivors report few, if any, symptoms of psychological distress. The prevalence of distress approximating clinically significant levels for both survivors (11%) and siblings (5%) reflects rates found in the general population. Yet when accounting for significant sociodemographic, socioeconomic, and health-status variables, survivors of childhood brain cancer, in the aggregate, appear to report significantly higher global distress and depression scores than do siblings. As in the general population, higher levels of distress among survivors and siblings were associated with female sex, low household income, lower educational attainment, being unmarried, not being employed in the past 12 months, and poor physical health status. No diagnostic or treatment-related variables were directly and significantly associated with increases in distress symptoms for survivors of childhood brain cancer.

Conclusion: Cancer treatment does not appear to contribute directly to increased psychological distress. Instead, distress appears to be associated with diminished social functioning that may be related to cancer type or treatment. Implementation and evaluation of supportive interventions that enhance survivors' social and vocational skills should be considered.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adolescent
  • Adult
  • Brain Neoplasms / psychology*
  • Brain Neoplasms / therapy
  • Case-Control Studies
  • Child
  • Child, Preschool
  • Female
  • Follow-Up Studies
  • Health Status
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • Multivariate Analysis
  • North America / epidemiology
  • Prevalence
  • Regression Analysis
  • Risk Factors
  • Socioeconomic Factors
  • Stress, Psychological / etiology*
  • Surveys and Questionnaires
  • Survivors / psychology*