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Journal of Cancer Survivorship
Published in: Journal of Cancer Survivorship 4/2016

01-08-2016

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

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

Published in: Journal of Cancer Survivorship | Issue 4/2016

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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.
Appendix
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Metadata
Title
The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies
Authors
Cheryl L. Cox
Liang Zhu
Rohit P. Ojha
Chenghong Li
Deo Kumar Srivastava
Barth B. Riley
Melissa M. Hudson
Les L. Robison
Publication date
01-08-2016
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 4/2016
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-016-0520-0

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