Development of a comprehensive health-related needs assessment for adult survivors of childhood cancer

Purpose: Examine the construct validity, stability, internal consistency, and item-response performance of a self-report health needs assessment for adult survivors of childhood cancer. Methods: A 190-item mailed survey was completed by 1,178 randomly selected (stratified on age, diagnosis, time since diagnosis) Childhood Cancer Survivor Study participants (mean age, 39. 66 [SD 7.71] years; time since diagnosis, 31.60 [SD 4. 71] years). Minorities and rural residents were oversampled at a 2:1 ratio. Results: The final instrument included 135 items comprising nine unidimensional subscales (Psycho-emotional, Health System Concerns, Cancer-Related Health Information, General Health, Survivor Care and Support, Surveillance, Coping, Fiscal Concerns, and Relationships). Confirmatory factor analysis (n = 1,178; RMSEA = 0. 020; 90 % CI = 0. 019-0. 020; CFI = 0.956; TLI = 0.955) and person-item fit variable maps established construct validity. Across subscales, Cronbach's alpha was 0.94-0.97, and the 4-week test-retest correlations were 0. 52-0. 91. In a Rasch analysis, item reliability was 0. 97-0. 99, person reliability was 0. 80-0. 90, and separation index scores were 2.00-3.01. Significant subscale covariates of higher need levels included demographics, diagnosis, and treatment exposures. Conclusions: The Childhood Cancer Survivor Study Needs Assessment Questionnaire (CCSS-NAQ) is reliable and construct-valid, has strong item-response properties, and discriminates need levels. Implications for Cancer Survivors: The CCSS-NAQ potentially can be used to: (1) directly assess adult childhood cancer survivors' self-reported health-related needs, (2) identify individuals or subgroups with higher-level needs, (3) inform prevention and direct intervention strategies, and (4) facilitate prioritization of health-care resource allocation.