Purpose
Describe 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 (PR) ratios 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% CI, 3.79 – 9.69), anxiety (PR=6.10; 95% CI, 3.82–9.72), 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 Survivors
These data can be used to enhance provider-survivor communication, identify at-risk subsamples, and appraise core intervention content.