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Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study

Lookup NU author(s): Professor Timothy Cheetham, Dr Claire WoodORCiD

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

© 2024 The Author(s). Muscle & Nerve published by Wiley Periodicals LLC.Introduction/Aims: Recent clinical guidelines recommend that adolescents with Duchenne muscular dystrophy (DMD) who are on daily glucocorticoid treatment should be offered pubertal induction in order to ensure adult levels of sex hormones as they reach adulthood. However, it remains unclear how gonadal status, including androgen concentrations, impacts physical function and future fertility. The aim of this study was to give a voice to adults with DMD, exploring their perspectives around sexual health, hormone treatment, and fertility. Methods: Qualitative data was collected from six adults with DMD through two online focus groups. Participants were recruited through Pathfinders Neuromuscular Alliance and Duchenne UK and invited to take part if they had DMD and were 18 years of age or older. Conversations were transcribed verbatim and an interpretivist paradigm was used with thematic analysis. Results: The main themes identified were (1) the need for communication and information about sexual health, (2) dealing with the potential fear of rejection, (3) physical barriers to relationships including sex, (4) testosterone supplementation in DMD, and (5) parenthood and fertility. Discussion: We recommend that clinicians work with young people with DMD individually, to explore the benefits of testosterone treatment for them and their personal sexual health needs. If they are offered treatment, this should always be accompanied by the opportunity for psychological support. This work highlights the need for further research to establish the role of testosterone supplementation in adults with DMD and its effects on fertility and the value of specific emotional and practical support for sexual health.


Publication metadata

Author(s): Hoskin J, Cheetham TD, Mitchell RT, Choong WS, Wood CL

Publication type: Article

Publication status: Published

Journal: Muscle and Nerve

Year: 2024

Pages: epub ahead of print

Online publication date: 11/07/2024

Acceptance date: 29/06/2024

Date deposited: 23/07/2024

ISSN (print): 0148-639X

ISSN (electronic): 1097-4598

Publisher: John Wiley and Sons Inc

URL: https://doi.org/10.1002/mus.28201

DOI: 10.1002/mus.28201

Data Access Statement: The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions


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