The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies

Cheryl L. Cox*, Liang Zhu, Rohit P. Ojha, Chenghong Li, Deo Kumar Srivastava, Barth B. Riley, Melissa M. Hudson, Les L. Robison

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

18 Scopus citations

Abstract

Purpose: This study describes the prevalence and predisposing factors for potentially modifiable unmet emotional, care/support, and information needs among adult survivors of childhood malignancies. Methods: A randomly selected/stratified sample of participants in the Childhood Cancer Survivor Study (CCSS) responded to the CCSS-Needs Assessment Questionnaire (CCSS-NAQ) (n = 1189; mean [SD] current age, 39.7 [7.7], range = 26–61 years; 60.9 % women; mean [SD] years since diagnosis, 31.6 [4.7]). Survivors self-reported demographic information, health concerns, and needs; diagnosis/treatment data were obtained from medical records. Adjusted proportional risk ratios (prevalence ratios, PRs) were used to evaluate 77 separate needs. Results: Fifty-four percent of survivors reported unmet psycho-emotional, 41 % coping, and 35 % care/support needs; 51, 35, and 33 %, respectively, reported unmet information needs related to cancer/treatment, the health care system, and surveillance. Female sex and annual income <$60K were associated with multiple needs; fewer needs were linked to diagnosis/years since/or age at diagnosis. Having moderate/extreme cancer-related anxiety/fear was associated with all needs, including a >6-fold increased prevalence for help dealing with “worry” (PR = 6.06; 95 % confidence interval [CI], 3.79–9.69) and anxiety (PR = 6.10; 95 % CI, 3.82–9.72) and a >5-fold increased prevalence for “needing to move on with life” (PR = 5.56; 95 % CI, 3.34–9.25) and dealing with “uncertainty about the future” (PR = 5.50; 95 % CI, 3.44–8.77). Radiation exposure and perceived health status were related to 42 and 29 needs, respectively. Conclusions: Demographic factors, disease/treatment characteristics, and intrapersonal factors can be used to profile survivors’ unmet emotional, care/support, and information needs. Implications for Cancer Survivors: These data can be used to enhance provider-survivor communication, identify at-risk subsamples, and appraise core intervention content.

Original languageEnglish (US)
Pages (from-to)743-758
Number of pages16
JournalJournal of Cancer Survivorship
Volume10
Issue number4
DOIs
StatePublished - Aug 1 2016
Externally publishedYes

Keywords

  • Cancer
  • Childhood cancer
  • Health-related needs
  • Oncology
  • Survivors

ASJC Scopus subject areas

  • Oncology
  • Oncology(nursing)

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