- Title
- Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionaire – Young People (CNQ-YP)
- Creator
- Clinton-McHarg, Tara; Carey, Mariko; Sanson-Fisher, Rob; D'Este, Catherine; Shakeshaft, Anthony
- Relation
- NHMRC.300749
- Relation
- Health and Quality of Life Outcomes Vol. 10, Issue 13
- Publisher Link
- http://dx.doi.org/10.1186/1477-7525-10-13
- Publisher
- BioMed Central
- Resource Type
- journal article
- Date
- 2012
- Description
- Background: 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. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Methods: Items 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. Results: The 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. Conclusions: The 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.
- Subject
- adolescents and young adults; cancer; unmet needs; measure development; psychometric evaluation; reliability; validity
- Identifier
- http://hdl.handle.net/1959.13/1042063
- Identifier
- uon:13998
- Identifier
- ISSN:1477-7525
- Language
- eng
- Full Text
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