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We performed a large outcome study at group and individual level in which the goals of genetic counselling were operationalized into cognitive and affective outcomes: empowerment, perceived personal control and anxiety. We then examined which socio-demographic and clinical variables were associated with changes in these outcomes. Data came from 1479 counselees who completed questionnaires (GCOS-18, PPC and STAI) at three time points: before the start of genetic counselling, after the first consultation and after the results of genetic counselling were disclosed. Results showed that at group level empowerment, perceived personal control and anxiety improved significantly after the whole genetic counselling process. Effect-sizes were medium for empowerment and small for the other outcomes. At individual level, 48% of counselees improved in empowerment, 21% in perceived personal control and 17% in anxiety. Around 10% of counselees worsened on all outcomes. Only 'reason for referral' and 'genetic test result' were significantly associated with changes in outcomes. This study demonstrated improvements among counselees in cognitive and affective outcomes after genetic counselling at group level. However, our results also suggest that there are opportunities for improvement at individual level, as many counselees remained stable and some even worsened on all outcomes. Routine outcome monitoring could help to explore the needs of counselees and could help to identify counselees who worsen.

Original publication

DOI

10.1038/s41431-020-0629-5

Type

Journal article

Journal

European journal of human genetics : EJHG

Publication Date

09/2020

Volume

28

Pages

1187 - 1195

Addresses

Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands. j.s.voorwinden@umcg.nl.

Keywords

Humans, Affect, Group Processes, Cognition, Genetic Counseling, Adult, Aged, Middle Aged, Patient Participation, Netherlands, Female, Male, Precision Medicine