Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Feb 16:17:711-721.
doi: 10.2147/JMDH.S430984. eCollection 2024.

Exploring Female Relatives of Patients with Hemophilia' Awareness, Attitudes, and Understanding Towards Genetic Testing

Affiliations

Exploring Female Relatives of Patients with Hemophilia' Awareness, Attitudes, and Understanding Towards Genetic Testing

Hua Zhao et al. J Multidiscip Healthc. .

Abstract

Purpose: A better understanding of the factors that influence engagement is needed to provide a reference for conducting genetic testing in female relatives of patients with hemophilia (PWH). We therefore determined the perceptions and understanding of genetic testing among female relatives of PWH in China.

Methods: We carried out a qualitative study using in-depth, semi-structured interviews with 11 female relatives of PWH in Shanxi Province, China. The resulting data were analyzed using thematic analyses.

Results: This study extracted four topics: uncertainty about carrier genetic status; limited understanding of genetic testing; coexistence of positive and negative coping; and multi-aspect demands.

Conclusion: Healthcare professionals should provide personalized and multidimensional health education and comprehensive decision-making support to female relatives of PWH, to enhance their motivation and willingness to undergo genetic testing. It is also important to actively improve relevant policies, strengthen the genetic testing service system, and promote the popularization of genetic testing in female relatives of PWH.

Keywords: attitudes; female; genetic testing; hemophilia; qualitative study.

PubMed Disclaimer

Conflict of interest statement

The authors report no conflicts of interest in this work.

Similar articles

Cited by

References

    1. Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia. 2020;Suppl 26(S6):1–158. doi:10.1111/hae.14046 - DOI - PubMed
    1. World Federation of Hemophilia. Report on the Annual Global Survey 2022. Montreal, Canada: WFH; 2023.
    1. Zhang L, Dai XY. Clinical research progress of hemophilia gene therapy. J Clin Hematol. 2022;35(07):464–468. doi:10.13201/j.issn.1004-2806.2022.07.003 - DOI
    1. Xue F, Dai J, Chen LX, et al. Report on diagnosis and treatment of hemophilia in China 2023[J]. J Diagnostics Concepts Practice. 2023;22(02):89–115. doi:10.16150/j.1671-2870.2023.02.001 - DOI
    1. Berntorp E, Fischer K, Hart DP, et al. Haemophilia. Nat Rev Dis Primers. 2021;7(1):45. doi:10.1038/s41572-021-00278-x - DOI - PubMed