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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

International Journal of Behavioral Medicine Aims and scope Submit manuscript

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.

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Notes

  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.

Abbreviations

FA:

factor analysis

IRI:

Informing Relatives Inventory

RMSEA:

root mean square error of estimation

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Acknowledgments

This study was funded by the Dutch Cancer Society; Grant number: UVA 2010-4658. Eveline de Geus, Cora M. Aalfs, Fred H. Menko, Rolf H. Sijmons, Mathilde G.E. Verdam, Hanneke C.J.M. de Haes, and Ellen M.A. Smets declare no conflicts of interest. This study was formally exempted from formal approval by the Medical Ethics committee of the Academic Medical Center in Amsterdam, since the Medical Research Involving Human Subjects Act (WMO) does not apply. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

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The authors declare that they have no competing interests.

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de Geus, E., Aalfs, C.M., Menko, F.H. et al. 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. Int.J. Behav. Med. 22, 551–560 (2015). https://doi.org/10.1007/s12529-014-9455-x

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