Abstract
BackgroundAdolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.MethodsItems were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.ResultsThe Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.ConclusionsThe CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.
Highlights
Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development
Five year survival among AYAs varies depending on the type of cancer diagnosed, overall survival rates range between 73% and 83% [1,4,7]
The aim of this study was to establish the psychometric properties of the Cancer Needs Questionnaire
Summary
Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. Cancer in adolescents and young adults (AYAs) comprises approximately 0.5-2% of all cancer diagnoses [1,2,3,4]. While definitions of adolescence and young adulthood vary, AYAs are commonly defined as those aged 15 to 30 years [2,5,6]. Five year survival among AYAs varies depending on the type of cancer diagnosed, overall survival rates range between 73% and 83% [1,4,7]. Adolescence and young adulthood is a critical phase of physical, emotional, cognitive and social development [10,11]. Difficulty accessing sexual health knowledge and obstacles to developing close interpersonal relationships may serve as barriers for developing sexual identity in this group [12]
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