Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy

Danique R M Vlaskamp; Patrick Rump; Petra M C Callenbach; Eva H Brilstra; Mary E Velthuizen; Oebele F Brouwer; Adelita V Ranchor; Conny M A van Ravenswaaij-Arts

doi:10.1016/j.ejpn.2021.03.015

Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy

Danique R M Vlaskamp, Patrick Rump, Petra M C Callenbach, Eva H Brilstra, Mary E Velthuizen, Oebele F Brouwer, Adelita V Ranchor, Conny M A van Ravenswaaij-Arts^*

^*Corresponding author voor dit werk

Onderzoeksoutput: Article › Academic › peer review

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Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients' or parents & rsquo; perspectives is, however, unknown. We studied the counseleereported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment - a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope - and anxiety. We asked patients or their parents (for those

(c) 2021 The Author(s). Published by Elsevier Ltd on behalf of European Paediatric Neurology Society. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

Originele taal-2	English
Pagina's (van-tot)	128-135
Aantal pagina's	8
Tijdschrift	European Journal of Paediatric Neurology
Volume	32
Vroegere onlinedatum	2-apr.-2021
DOI's	https://doi.org/10.1016/j.ejpn.2021.03.015
Status	Published - mei-2021

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Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsyFinal publisher's version, 983 KBLicentie: CC BY

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title = "Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy",

abstract = "Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients' or parents & rsquo; perspectives is, however, unknown. We studied the counseleereported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment - a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope - and anxiety. We asked patients or their parents (for those(c) 2021 The Author(s). Published by Elsevier Ltd on behalf of European Paediatric Neurology Society. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).",

keywords = "Genetic counselling, Empowerment, Epilepsy, Genetic testing, Outcome, CLINICAL GENETICS, IMPACT, INDIVIDUALS, INVENTORY, DIAGNOSIS, OUTCOMES, NORMS, SCALE, CARE",

author = "Vlaskamp, {Danique R M} and Patrick Rump and Callenbach, {Petra M C} and Brilstra, {Eva H} and Velthuizen, {Mary E} and Brouwer, {Oebele F} and Ranchor, {Adelita V} and {van Ravenswaaij-Arts}, {Conny M A}",

year = "2021",

month = may,

doi = "10.1016/j.ejpn.2021.03.015",

language = "English",

volume = "32",

pages = "128--135",

journal = "European Journal of Paediatric Neurology",

issn = "1090-3798",

publisher = "ELSEVIER SCI LTD",

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TY - JOUR

T1 - Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy

AU - Vlaskamp, Danique R M

AU - Rump, Patrick

AU - Callenbach, Petra M C

AU - Brilstra, Eva H

AU - Velthuizen, Mary E

AU - Brouwer, Oebele F

AU - Ranchor, Adelita V

AU - van Ravenswaaij-Arts, Conny M A

PY - 2021/5

Y1 - 2021/5

N2 - Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients' or parents & rsquo; perspectives is, however, unknown. We studied the counseleereported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment - a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope - and anxiety. We asked patients or their parents (for those(c) 2021 The Author(s). Published by Elsevier Ltd on behalf of European Paediatric Neurology Society. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

AB - Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients' or parents & rsquo; perspectives is, however, unknown. We studied the counseleereported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment - a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope - and anxiety. We asked patients or their parents (for those(c) 2021 The Author(s). Published by Elsevier Ltd on behalf of European Paediatric Neurology Society. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

KW - Genetic counselling

KW - Empowerment

KW - Epilepsy

KW - Genetic testing

KW - Outcome

KW - CLINICAL GENETICS

KW - IMPACT

KW - INDIVIDUALS

KW - INVENTORY

KW - DIAGNOSIS

KW - OUTCOMES

KW - NORMS

KW - SCALE

KW - CARE

U2 - 10.1016/j.ejpn.2021.03.015

DO - 10.1016/j.ejpn.2021.03.015

M3 - Article

C2 - 33971557

SN - 1090-3798

VL - 32

SP - 128

EP - 135

JO - European Journal of Paediatric Neurology

JF - European Journal of Paediatric Neurology

ER -

Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy

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