Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle and the Hunter Medical Research Institute, Callaghan, New South Wales, Australia.
Health Qual Life Outcomes. 2012 Jan 30;10:13. doi: 10.1186/1477-7525-10-13.
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.
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.
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.
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.
青少年和年轻成人（AYA）癌症幸存者由于癌症发生在发育的关键阶段，可能具有独特的身体、心理和社会需求。本研究旨在开发一种具有严格心理测量学标准的未满足需求衡量标准，以捕捉该群体的特定需求。
根据全面的文献回顾、AYA 焦点小组以及来自医疗保健提供者、研究人员和其他专业人员的反馈，制定了这些条目。该衡量标准通过一项州级癌症登记处招募的 32 名 AYA 癌症幸存者的试点测试，以建立其表面和内容效度。通过七个治疗中心招募了 139 名 AYA 癌症患者和幸存者的主要样本，并邀请他们完成问卷。为了建立测试-重测信度，34 名参与者的子样本第二次完成了该测量。进行了探索性因素分析，并评估了该测量的内部一致性、判别有效性、潜在反应性和可接受性。
癌症需求问卷-年轻人（CNQ-YP）具有建立的表面和内容效度以及可接受性。最终的衡量标准有 70 个条目和六个因素：治疗环境和护理（33 个条目）；感觉和关系（14 个条目）；日常生活（12 个条目）；信息和活动（5 个条目）；教育（3 个条目）；和工作（3 个条目）。所有领域的 Cronbach's alpha 值均大于 0.80。除了四项条目外，所有条目都达到了加权 kappa 值大于 0.60 的项目间测试-重测信度。
CNQ-YP 是专门为 AYA 癌症患者和幸存者开发的第一个多维未满足需求衡量标准。该衡量标准具有很强的因子结构，以及良好的内部一致性和测试-重测信度。然而，小样本量对所进行的统计分析的可靠性有影响，特别是探索性因素分析。建议进行更大样本量的未来研究以确认该测量的因子结构。还应进行纵向研究以确定反应性和预测有效性。
