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QUOTE‐gene ca : development of a counselee‐centered instrument to measure needs and preferences in genetic counseling for hereditary cancer
Author(s) -
Pieterse Arwen,
van Dulmen Sandra,
Ausems Margreet,
Schoemaker Angela,
Beemer Frits,
Bensing Jozien
Publication year - 2005
Publication title -
psycho‐oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.41
H-Index - 137
eISSN - 1099-1611
pISSN - 1057-9249
DOI - 10.1002/pon.853
Subject(s) - coping (psychology) , distress , genetic counseling , psychology , anxiety , clinical psychology , applied psychology , medicine , psychiatry , genetics , biology
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. Copyright © 2004 John Wiley & Sons, Ltd.