Towards personalized genetic counselling: exploring subgroups among counselees based on different facets of empowerment before the first visit

Voorwinden, J., Birnie, E., Plantinga, M., Ausems, M., Knoers, N., Velthuizen, M., Lucassen, A., van Langen, I. and Ranchor, A. (2020) Towards personalized genetic counselling: exploring subgroups among counselees based on different facets of empowerment before the first visit. European Journal of Human Genetics, 28 (SUPPL 1), 109-110.

Abstract

Introduction: The main goal of genetic counselling is improving empowerment (cognitive/affective outcomes). The aim of this study is to explore subgroups among counselees based on different facets of empowerment. Subsequently, to examine if these subgroups are associated with socio-demographic and clinical variables. Recognizing the specific needs regarding genetic counselling for each subgroup, could facilitate personalized genetic counselling.

Materials and Methods: Data from 2446 unselected counselees from two Dutch academic centres was collected with a validated questionnaire: the GCOS-18, which measures six facets of empowerment (hope, knowledge about the condition, knowledge about genetic services, negative emotions, uncertainty about heredity, uncertainty about the treatment). Subgroups were analysed with latent profile analysis.

Results: Six subgroups could be distinguished. Profile 1 (n = 727) scored best on all facets of empowerment, and consisted of more higher educated and pre-symptomatic counselees. Profile 2 (n = 724) scored average on all facets of empowerment. Profile 3 (n = 225) experienced less hope, and consisted of more index patients. Profile 4 (n = 130) experienced less hope and knowledge; parents of referred children were overrepresented. Profile 5 (n = 491) had strong uncertainty about heredity, these counselees were older and more often at risk of hereditary cancer. Profile 6 (n = 149) had strong negative emotions, uncertainty about heredity and uncertainty about the treatment. These counselees were older and lower educated.

Conclusion: This study reveals subgroups among counselees. The scoring on different facets of empowerment allows to distinguish specific subgroups, each having their own specific needs, which could be used for personalization of the genetic counselling process.

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Contributors

Author: A. Lucassen

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