Literature DB >> 12751487

How disturbing is it to be approached for a genetic cascade screening programme for familial hypercholesterolaemia? Psychological impact and screenees' views.

M C van Maarle1, M E A Stouthard, P J Marang-van de Mheen, N S Klazinga, G J Bonsel.   

Abstract

OBJECTIVES: To assess the screenees' views on, and the psychological impact of, a family-based genetic screening programme for familial hypercholesterolaemia (FH) and to evaluate non-participation.
METHODS: Self-administered questionnaires were filled out at the time of screening and after communication of the test result. Non-participants were interviewed by phone.
RESULTS: Of the people approached for screening, 2% did not participated. These 2% were not interested, had already been clinically diagnosed, or were afraid of insurance consequences. 677 screenees participated, of whom 215 (32%) tested FH positive. Less than 5% of the screenees were critical of the approach and the information provided. 20% of the screenees expressed feelings of social pressure. Effects on mood were minimal to absent, as were general 'quality of life' effects.
CONCLUSIONS: Screening for FH is highly acceptable to screenees, although social pressure is prevalent. Only a small percentage of people being approached did not participate.

Entities:  

Keywords:  Empirical Approach; Genetics and Reproduction

Mesh:

Year:  2001        PMID: 12751487     DOI: 10.1159/000064200

Source DB:  PubMed          Journal:  Community Genet        ISSN: 1422-2795


  14 in total

Review 1.  Barriers and facilitators for cascade testing in genetic conditions: a systematic review.

Authors:  Swetha Srinivasan; Nae Yeon Won; W David Dotson; Sarah T Wright; Megan C Roberts
Journal:  Eur J Hum Genet       Date:  2020-09-18       Impact factor: 4.246

2.  Patients' experiences and views of cascade screening for familial hypercholesterolemia (FH): a qualitative study.

Authors:  Nina Hallowell; Nick Jenkins; Margaret Douglas; Simon Walker; Robert Finnie; Mary Porteous; Julia Lawton
Journal:  J Community Genet       Date:  2011-09-02

3.  Introducing genetic testing with case finding for familial hypercholesterolaemia in primary care: qualitative study of patient and health professional experience.

Authors:  Luisa Silva; Laura Condon; Nadeem Qureshi; Brittany Dutton; Stephen Weng; Joe Kai
Journal:  Br J Gen Pract       Date:  2022-06-30       Impact factor: 6.302

4.  Patients' perceptions and experiences of familial hypercholesterolemia, cascade genetic screening and treatment.

Authors:  Sarah J Hardcastle; Ellen Legge; Chris S Laundy; Sarah J Egan; Rosemary French; Gerald F Watts; Martin S Hagger
Journal:  Int J Behav Med       Date:  2015-02

5.  Pre-symptomatic genetic testing for inherited cardiac conditions: a qualitative exploration of psychosocial and ethical implications.

Authors:  Elizabeth Ormondroyd; Stephanie Oates; Michael Parker; Edward Blair; Hugh Watkins
Journal:  Eur J Hum Genet       Date:  2013-05-01       Impact factor: 4.246

Review 6.  A Person-Centered Approach to Cardiovascular Genetic Testing.

Authors:  Julia Platt
Journal:  Cold Spring Harb Perspect Med       Date:  2020-07-01       Impact factor: 5.159

7.  Bioethical issues of preventing hereditary diseases with late onset in the Sakha Republic (Yakutia).

Authors:  Sardana K Kononova; Oksana G Sidorova; Sardana A Fedorova; Fedor A Platonov; Vera L Izhevskaya; Elza K Khusnutdinova
Journal:  Int J Circumpolar Health       Date:  2014-07-24       Impact factor: 1.228

8.  Screening for Familial Hypercholesterolemia in Children: What Can We Learn From Adult Screening Programs?

Authors:  Lidewij Henneman; Colleen M McBride; Martina C Cornel; Debra Duquette; Nadeem Qureshi
Journal:  Healthcare (Basel)       Date:  2015-10-26

9.  A randomized controlled trial of genetic testing and cascade screening in familial hypercholesterolemia.

Authors:  Ezimamaka Ajufo; Emil M deGoma; Anna Raper; Kristen Dilzell Yu; Marina Cuchel; Daniel J Rader
Journal:  Genet Med       Date:  2021-05-26       Impact factor: 8.822

Review 10.  Cardiovascular Cascade Genetic Testing: Exploring the Role of Direct Contact and Technology.

Authors:  Amy C Sturm
Journal:  Front Cardiovasc Med       Date:  2016-04-19
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