TY - JOUR
T1 - The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies
AU - Cox, Cheryl L.
AU - Zhu, Liang
AU - Ojha, Rohit P.
AU - Li, Chenghong
AU - Srivastava, Deo Kumar
AU - Riley, Barth B.
AU - Hudson, Melissa M.
AU - Robison, Les L.
N1 - Funding Information:
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).
Publisher Copyright:
© 2016, Springer Science+Business Media New York.
PY - 2016/8/1
Y1 - 2016/8/1
N2 - 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.
AB - 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.
KW - Cancer
KW - Childhood cancer
KW - Health-related needs
KW - Oncology
KW - Survivors
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U2 - 10.1007/s11764-016-0520-0
DO - 10.1007/s11764-016-0520-0
M3 - Article
C2 - 26897613
AN - SCOPUS:84958747448
SN - 1932-2259
VL - 10
SP - 743
EP - 758
JO - Journal of Cancer Survivorship
JF - Journal of Cancer Survivorship
IS - 4
ER -
