“Forewarned and forearmed”: Long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care

on behalf of the ANZCHOG Survivorship Study Group

Research output: Contribution to journalArticlepeer-review

58 Citations (Scopus)


Objective This mixed-method study assessed 1) survivors’ and parents’ information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics. Methods Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics. Results Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD = 7.9; time since diagnosis: 19.7years, SD = 8.8) and 163 parents (child age: 12.9years, SD = 2.4; time since diagnosis: 9.7years, SD = 2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p = 0.001), dissatisfaction with follow-up care (p = 0.003), lower overall health (p = 0.014), higher perceived risk of late effects (p < 0.001), and greater anxiety/depression (p < 0.001) were significantly associated with more unmet needs. Conclusion Unmet information needs were common for survivors and parents of CCS. Practice implications Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.

Original languageEnglish
Pages (from-to)355-363
Number of pages9
JournalPatient Education and Counseling
Issue number2
Publication statusPublished - 1 Feb 2017
Externally publishedYes

Cite this