de Geus Eveline, Aalfs Cora M, Menko Fred H, Sijmons Rolf H, Verdam Mathilde G E, de Haes Hanneke C J M, Smets Ellen M A
Department of Medical Psychology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands,
Int J Behav Med. 2015 Aug;22(4):551-60. doi: 10.1007/s12529-014-9455-x.
Despite the use of genetic services, counselees do not always share hereditary cancer information with at-risk relatives. Reasons for not informing relatives may be categorized as a lack of: knowledge, motivation, and/or self-efficacy.
This study aims to develop and test the psychometric properties of the Informing Relatives Inventory, a battery of instruments that intend to measure counselees' knowledge, motivation, and self-efficacy regarding the disclosure of hereditary cancer risk information to at-risk relatives.
Guided by the proposed conceptual framework, existing instruments were selected and new instruments were developed. We tested the instruments' acceptability, dimensionality, reliability, and criterion-related validity in consecutive index patients visiting the Clinical Genetics department with questions regarding hereditary breast and/or ovarian cancer or colon cancer.
Data of 211 index patients were included (response rate = 62%). The Informing Relatives Inventory (IRI) assesses three barriers in disclosure representing seven domains. Instruments assessing index patients' (positive) motivation and self-efficacy were acceptable and reliable and suggested good criterion-related validity. Psychometric properties of instruments assessing index patients knowledge were disputable. These items were moderately accepted by index patients and the criterion-related validity was weaker.
This study presents a first conceptual framework and associated inventory (IRI) that improves insight into index patients' barriers regarding the disclosure of genetic cancer information to at-risk relatives. Instruments assessing (positive) motivation and self-efficacy proved to be reliable measurements. Measuring index patients knowledge appeared to be more challenging. Further research is necessary to ensure IRI's dimensionality and sensitivity to change.
尽管提供了遗传咨询服务，但咨询者并不总是与有风险的亲属分享遗传性癌症信息。不告知亲属的原因可归类为缺乏：知识、动机和/或自我效能感。
本研究旨在开发并测试“告知亲属量表”的心理测量特性，该量表是一系列旨在测量咨询者在向有风险的亲属披露遗传性癌症风险信息方面的知识、动机和自我效能感的工具。
在提出的概念框架指导下，选择现有工具并开发新工具。我们在连续就诊于临床遗传学部门、询问遗传性乳腺癌和/或卵巢癌或结肠癌相关问题的索引患者中测试了这些工具的可接受性、维度、可靠性和与标准相关的有效性。
纳入了211名索引患者的数据（应答率 = 62%）。“告知亲属量表”（IRI）评估了披露过程中的三个障碍，涵盖七个领域。评估索引患者（积极）动机和自我效能感的工具是可接受且可靠的，并显示出良好的与标准相关的有效性。评估索引患者知识的工具的心理测量特性存在争议。这些项目被索引患者适度接受，且与标准相关的有效性较弱。
本研究提出了首个概念框架及相关量表（IRI），有助于更深入了解索引患者在向有风险的亲属披露遗传性癌症信息方面的障碍。评估（积极）动机和自我效能感的工具被证明是可靠的测量方法。测量索引患者的知识似乎更具挑战性。有必要进行进一步研究以确保IRI的维度和对变化的敏感性。
