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

J Cancer Surviv. 2013 Mar;7(1):1-19. doi: 10.1007/s11764-012-0249-3. Epub 2012 Dec 5.


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.

Publication types

  • Randomized Controlled Trial
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Female
  • Humans
  • Male
  • Needs Assessment*
  • Neoplasms / mortality
  • Neoplasms / psychology*
  • Neoplasms / therapy
  • Psychometrics
  • Quality of Life*
  • Social Support
  • Surveys and Questionnaires
  • Survival Rate
  • Survivors / psychology*
  • Young Adult