The University of Southampton
University of Southampton Institutional Repository
Warning ePrints Soton is experiencing an issue with some file downloads not being available. We are working hard to fix this. Please bear with us.

Cognitive and affective outcomes of genetic counselling in the Netherlands at group and individual level: a personalized approach seems necessary

Cognitive and affective outcomes of genetic counselling in the Netherlands at group and individual level: a personalized approach seems necessary
Cognitive and affective outcomes of genetic counselling in the Netherlands at group and individual level: a personalized approach seems necessary

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.

1018-4813
1187-1195
Voorwinden, Jan S.
1c1d9b5f-51f6-4a44-9143-9b9b44953de7
Plantinga, Mirjam
80329f67-dce0-4e72-ad91-8aff2212dde6
Ausems, Margreet
d25a4c78-6f89-47ed-a156-c9df208053c8
Knoers, Nine
69c9e841-1132-4696-af03-bc0420e961f0
Velthuizen, Mary
4c919221-c67c-43bc-8a09-887fd23db38a
Birnie, Erwin
dad5871f-46ff-4765-9c3f-b2d89aa71a31
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ranchor, Adelita V.
6097efc1-d863-4171-bc44-16f01cf6ab91
van Langen, Irene M.
bcc17f78-800f-4deb-ac58-7c7e2f408bc7
Voorwinden, Jan S.
1c1d9b5f-51f6-4a44-9143-9b9b44953de7
Plantinga, Mirjam
80329f67-dce0-4e72-ad91-8aff2212dde6
Ausems, Margreet
d25a4c78-6f89-47ed-a156-c9df208053c8
Knoers, Nine
69c9e841-1132-4696-af03-bc0420e961f0
Velthuizen, Mary
4c919221-c67c-43bc-8a09-887fd23db38a
Birnie, Erwin
dad5871f-46ff-4765-9c3f-b2d89aa71a31
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ranchor, Adelita V.
6097efc1-d863-4171-bc44-16f01cf6ab91
van Langen, Irene M.
bcc17f78-800f-4deb-ac58-7c7e2f408bc7

Voorwinden, Jan S., Plantinga, Mirjam, Ausems, Margreet, Knoers, Nine, Velthuizen, Mary, Birnie, Erwin, Lucassen, Anneke M., Ranchor, Adelita V. and van Langen, Irene M. (2020) Cognitive and affective outcomes of genetic counselling in the Netherlands at group and individual level: a personalized approach seems necessary. European Journal of Human Genetics, 28 (9), 1187-1195. (doi:10.1038/s41431-020-0629-5).

Record type: Article

Abstract

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.

Text
revised article outcomes genetic counseling 2.0 clean - Accepted Manuscript
Download (94kB)
Text
Table 1
Restricted to Repository staff only
Request a copy
Text
Table 2
Restricted to Repository staff only
Request a copy
Text
Table 3
Restricted to Repository staff only
Request a copy
Text
Figure 1
Restricted to Repository staff only
Request a copy
Text
S1
Restricted to Repository staff only
Request a copy
Text
S2
Restricted to Repository staff only
Request a copy
Text
S3
Restricted to Repository staff only
Request a copy
Text
S4
Restricted to Repository staff only
Request a copy

Show all 9 downloads.

More information

Accepted/In Press date: 24 March 2020
e-pub ahead of print date: 27 April 2020

Identifiers

Local EPrints ID: 441228
URI: http://eprints.soton.ac.uk/id/eprint/441228
ISSN: 1018-4813
PURE UUID: 4eb5b39e-60fc-49ff-9cb4-c9efe97eb9e0
ORCID for Anneke M. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 05 Jun 2020 16:31
Last modified: 26 Nov 2021 05:57

Export record

Altmetrics

Contributors

Author: Jan S. Voorwinden
Author: Mirjam Plantinga
Author: Margreet Ausems
Author: Nine Knoers
Author: Mary Velthuizen
Author: Erwin Birnie
Author: Adelita V. Ranchor
Author: Irene M. van Langen

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×