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.
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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.affiliation: Department of Medical Psychology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands, e.degeus@amc.uva.nl.
authors.forename: Eveline
authors.initials: E
authors.lastname: de Geus
authors.forename: Cora M
authors.initials: CM
authors.lastname: Aalfs
authors.forename: Fred H
authors.initials: FH
authors.lastname: Menko
authors.forename: Rolf H
authors.initials: RH
authors.lastname: Sijmons
authors.forename: Mathilde G E
authors.initials: MG
authors.lastname: Verdam
authors.forename: Hanneke C J M
authors.initials: HC
authors.lastname: de Haes
authors.forename: Ellen M A
authors.initials: EM
authors.lastname: Smets
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D009042:Motivation; D009369:Neoplasms / Q000235:genetics*; D011594:Psychometrics; D015203:Reproducibility of Results; D012306:Risk; D020377:Self Efficacy; D014342:Truth Disclosure; D055815:Young Adult