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

This study describes the prevalence and predisposing factors for potentially modifiable unmet emotional, care/support, and information needs among adult survivors of childhood malignancies. 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. 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. demographic factors, disease/treatment characteristics, and intrapersonal factors can be used to profile survivors’ unmet emotional, care/support, and information needs. these data can be used to enhance provider-survivor communication, identify at-risk subsamples, and appraise core intervention content.