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

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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.

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Author information

Authors and Affiliations

  1. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-3678, USA

    Cheryl L. Cox, Rohit P. Ojha & Les L. Robison

  2. Department of Biostatistics, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-3678, USA

    Liang Zhu, Chenghong Li & Deo Kumar Srivastava

  3. Department of Oncology, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-3678, USA

    Melissa M. Hudson

  4. Department of Health Systems Sciences, University of Illinois-Chicago, 845 S. Damen Avenue, Chicago, IL, 60612, USA

    Barth B. Riley

Authors
  1. Cheryl L. Cox
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  2. Liang Zhu
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  4. Chenghong Li
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  5. Deo Kumar Srivastava
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  6. Barth B. Riley
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  7. Melissa M. Hudson
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  8. Les L. Robison
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Corresponding author

Correspondence to Cheryl L. Cox.

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Funding

This study was funded by NIH grants R21 CA142921 (CL Cox, PI), U24 CA55727 (GT Armstrong, PI), Cancer Center Support (CORE) grant P30 CA21765 (C. Roberts, PI), and the American Lebanese Syrian Associated Charities (ALSAC).

Conflict of interest

The authors declare that they have no competing interests.

Ethics approval

All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The overall study was approved by the St. Jude Children’s Research Hospital Institutional Review Board and at each of the 27 participating institutions in the Childhood Cancer Survivor Study.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Cox, C.L., Zhu, L., Ojha, R.P. et al. The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies. J Cancer Surviv 10, 743–758 (2016). https://doi.org/10.1007/s11764-016-0520-0

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  • DOI: https://doi.org/10.1007/s11764-016-0520-0

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