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

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Abstract

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.

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Support

R21 CA142921 (CL Cox, PI), U24 CA55727 (LL Robison, PI), and CA21765 (RJ Gilbertson, PI) of the National Institutes of Health and the American Lebanese Syrian Associated Charities (ALSAC).

Conflict of interest

The authors declare that they have no conflicts of interest.

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Authors and Affiliations

  1. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-3678, USA

    Cheryl L. Cox, Deborah A. Sherrill-Mittleman, Lauren J. Williams, Margie G. Zacher & Les L. Robison

  2. Department of Health Systems Sciences, University of Illinois-Chicago, 845 S. Damen Avenue, Chicago, IL, 60612, USA

    Barth B. Riley

  3. Department of Oncology, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-3678, USA

    Melissa M. Hudson

  4. Department of Clinical Statistics and Biostatistics, Fred Hutchison Cancer Research Center, 1100 Fairview Ave. N, P.O. Box #19024, Seattle, WA, 98109-1024, USA

    Wendy M. Leisenring

  5. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-2794, USA

    Cheryl L. Cox

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  1. Cheryl L. Cox
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  2. Deborah A. Sherrill-Mittleman
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Correspondence to Cheryl L. Cox.

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Cox, C.L., Sherrill-Mittleman, D.A., Riley, B.B. et al. Development of a comprehensive health-related needs assessment for adult survivors of childhood cancer. J Cancer Surviv 7, 1–19 (2013). https://doi.org/10.1007/s11764-012-0249-3

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