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International Journal of Behavioral Medicine
Published in: International Journal of Behavioral Medicine 4/2015

01-08-2015

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

Authors: Eveline de Geus, Cora M. Aalfs, Fred H. Menko, Rolf H. Sijmons, Mathilde G. E. Verdam, Hanneke C. J. M. de Haes, Ellen M. A. Smets

Published in: International Journal of Behavioral Medicine | Issue 4/2015

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Abstract

Background

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.

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.

Method

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.

Results

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.

Conclusion

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.
Footnotes
1
To address problems of non-response emerging in batch 1, the instruments for positive and negative motivation were adjusted. First, six items were removed based on high inter-correlations (>0.3). Next, deviating answer categories of ten items (makes informing harder/easier) were adjusted so they were comparable with the remaining items (plays a role in disclosure decision). No differences in score distribution (Kolmogorov-Smirnov test) and means (Mann–Whitney U test) were found between batches 1 and 2 on these items. Therefore, data were combined.
 
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Metadata
Title
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
Authors
Eveline de Geus
Cora M. Aalfs
Fred H. Menko
Rolf H. Sijmons
Mathilde G. E. Verdam
Hanneke C. J. M. de Haes
Ellen M. A. Smets
Publication date
01-08-2015
Publisher
Springer US
Published in
International Journal of Behavioral Medicine / Issue 4/2015
Print ISSN: 1070-5503
Electronic ISSN: 1532-7558
DOI
https://doi.org/10.1007/s12529-014-9455-x

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