Health-related needs hierarchies of adult survivors of pediatric malignancies: Forecasting priorities to inform intervention strategies

Background: Great progress has been made in documenting morbidity, mortality, and treatment effects in the rapidly growing population of adult survivors of childhood cancer; however, we know little about survivors' health-related needs and how these needs affect their adult lives. Previous studies have relied on underdeveloped instrumentation and non-representative samples. Methods: The Childhood Cancer Survivor Study Needs Assessment Questionnaire (CCSS-NAQ) was administered to 1,178 randomly selected Childhood Cancer Survivor Study participants (mean age = 39.66, SD = 7.71; mean years since diagnosis = 31.61, SD = 4.71). Minorities and rural residents were oversampled at a 2:1 rate. Rasch modeling was used to assess the instrument's ability to hierarchically order both individuals (based on need level) and items (based on frequency of endorsement). Results: Data fit the Rasch model well: item reliability was 0.97 - 0.99, person reliability was 0.80 – 0.90, and separation index scores were 2.00 - 3.01. Item hierarchy was clinically significant across subscales (Psycho-Emotional, Health System Information, Cancer-related Information, General Health, Care & Support, Surveillance, Coping, Fiscal Concerns, Relationships). Common needs were help to deal with fears/worry; health maintenance; and information about late effects and screening. Less common, but endorsed at higher intensity, were needs related to provider interaction/communication. Demographics, diagnosis, and treatment exposures were strong predictors of need levels across subscales. Conclusion: The CCSS-NAQ successfully captures all levels of health-related needs with equal precision and provides meaningful need hierarchies. Accurate needs assessment is essential to inform health promotion and risk-reduction interventions for this vulnerable population.