ArticleInternational journal of behavioral medicine2015
Development of the Informing Relatives Inventory (IRI): Assessing Index Patients' Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives.
Article in International journal of behavioral medicine, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 18 citations in OpenAlex.
- Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.Journal of genetic counseling · 2016Trial
- Family communication of cancer genetic test results in an ethnically diverse population: a qualitative exploration of more than 200 patients.Journal of community genetics · 2024Article
- Men with metastatic prostate cancer carrying a pathogenic germline variant in breast cancer genes: disclosure of genetic test results to relatives.Familial cancer · 2024Article
- Predicting Openness of Communication in Families With Hereditary Breast and Ovarian Cancer Syndrome: Natural Language Processing Analysis.JMIR formative research · 2023Article
- Mainstream germline genetic testing in men with metastatic prostate cancer: design and protocol for a multicenter observational study.BMC cancer · 2022Article
- A Focus Group Study of Perceptions of Genetic Risk Disclosure in Members of the Public in Sweden: "I'll Phone the Five Closest Ones, but What Happens to the Other Ten?"Journal of personalized medicine · 2021Article
- Article
- Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study.JMIR research protocols · 2021Article
- Usefulness of mobile apps for communication of genetic test results to at-risk family members in a U.S. integrated health system: a qualitative approach from user-testing.Health policy and technology · 2021Article
- Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden.Hereditary cancer in clinical practice · 2020Article
- "It would be so much easier": health system-led genetic risk notification-feasibility and acceptability of cascade screening in an integrated system.Journal of community genetics · 2019Article
- Article
- Breast Cancer Genetic Counseling: A Surgeon's Perspective.Frontiers in surgery · 2016Review
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Authors and funding
7 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDespite 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. PURPOSE: 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.
methodGuided 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.
resultsData 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.
conclusionThis 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.
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