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

ABSTRACT: 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.

SUBMITTER: Cox CL

PROVIDER: S-EPMC5341614 | biostudies-literature | 2016 Aug

REPOSITORIES: biostudies-literature

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

Cox Cheryl L CL Zhu Liang L Ojha Rohit P RP Li Chenghong C Srivastava Deo Kumar DK Riley Barth B BB Hudson Melissa M MM Robison Les L LL

Journal of cancer survivorship : research and practice 20160220 4

<h4>Purpose</h4>This study describes the prevalence and predisposing factors for potentially modifiable unmet emotional, care/support, and information needs among adult survivors of childhood malignancies.<h4>Methods</h4>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, 3 ...[more]

PMID: 26897613

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Dataset Information

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

Publications

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

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