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.
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.
Authors: Geraldine R Vink; Christi J van Asperen; Peter Devilee; Martijn H Breuning; Egbert Bakker Journal: Eur J Hum Genet Date: 2005-05 Impact factor: 4.246
Authors: Erna Claes; Gerry Evers-Kiebooms; Andrea Boogaerts; Marleen Decruyenaere; Lieve Denayer; Eric Legius Journal: Am J Med Genet A Date: 2003-01-01 Impact factor: 2.802
Authors: Esme Finlay; Jill E Stopfer; Eric Burlingame; Katherine Goldfeder Evans; Katherine L Nathanson; Barbara L Weber; Katrina Armstrong; Timothy R Rebbeck; Susan M Domchek Journal: Genet Test Date: 2008-03
Authors: Eveline de Geus; Willem Eijzenga; Fred H Menko; Rolf H Sijmons; Hanneke C J M de Haes; Cora M Aalfs; Ellen M A Smets Journal: J Genet Couns Date: 2016-04-22 Impact factor: 2.537
Authors: Lieke M van den Heuvel; Yvonne M Hoedemaekers; Annette F Baas; J Peter van Tintelen; Ellen M A Smets; Imke Christiaans Journal: BMJ Open Date: 2019-07-09 Impact factor: 2.692
Authors: Nora B Henrikson; Paula R Blasi; Stephanie M Fullerton; Jane Grafton; Kathleen A Leppig; Gail P Jarvik; Eric B Larson Journal: J Community Genet Date: 2019-03-06
Authors: Andreas Andersson; Carolina Hawranek; Anna Öfverholm; Hans Ehrencrona; Kalle Grill; Senada Hajdarevic; Beatrice Melin; Emma Tham; Barbro Numan Hellquist; Anna Rosén Journal: Hered Cancer Clin Pract Date: 2020-09-15 Impact factor: 2.857
Authors: Deborah Cragun; Jason Beckstead; Meagan Farmer; Gillian Hooker; Marleah Dean; Ellen Matloff; Sonya Reid; Ann Tezak; Anne Weidner; Jennifer G Whisenant; Tuya Pal Journal: BMC Cancer Date: 2021-10-13 Impact factor: 4.430