title: QUOTE-gene(ca): development of a counselee-centered instrument to measure needs and preferences in genetic counseling for hereditary cancer.
abstract: Counselees' motives for seeking genetic counseling for hereditary cancer have already been investigated, however not using instruments based on counselees' perspective. In addition, expectations regarding the process of counseling have scarcely been assessed. This article describes the construction and psychometric properties of the QUOTE-gene(ca), a counselee-centered instrument intended to measure needs and preferences in genetic counseling for hereditary cancer. Formulation of the items involved input from counselees and the instrument was derived from a conceptual framework for measuring patient satisfaction. Two-hundred new counselees completed a questionnaire containing the instrument and measures of coping style (TMSI), generalized anxiety (STAI) and cancer-related stress reactions (IES), prior to their first consultation. Results showed that the instrument captures relevant issues of concern with high internal consistency, and was associated, as expected, with validated measures of coping style and distress. Responses showed that major concerns prior to counseling relate to: receiving information about risk and preventive strategies; the procedure of counseling; and preferences on how the interaction with the counselor proceeds. Receiving emotional support and discussing emotional aspects were considered relatively less important. Increasing insight into individual needs may help counselors in better addressing these concerns, potentially increasing the likelihood of successful counseling.
authors.affiliation: NIVEL (Netherlands Institute of Health Services Research), PO Box 1568, 3500 BN Utrecht, Netherlands. a.pieterse@nivel.nl
authors.forename: Arwen
authors.initials: A
authors.lastname: Pieterse
authors.forename: Sandra
authors.initials: S
authors.lastname: van Dulmen
authors.forename: Margreet
authors.initials: M
authors.lastname: Ausems
authors.forename: Angela
authors.initials: A
authors.lastname: Schoemaker
authors.forename: Frits
authors.initials: F
authors.lastname: Beemer
authors.forename: Jozien
authors.initials: J
authors.lastname: Bensing
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D008875:Middle Aged; D009042:Motivation; D020380:Needs Assessment; D009369:Neoplasms / Q000209:etiology* / Q000235:genetics*; D017060:Patient Satisfaction; D011594:Psychometrics; D011795:Surveys and Questionnaires