Abstract：
OBJECTIVE: 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.
CONCLUSIONS: 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.
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.
CONCLUSIONS: 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.
摘要：
目的：最近的临床指南建议，每天接受糖皮质激素治疗的Duchenne型肌营养不良症（DMD）青少年应进行青春期诱导，以确保成年时的性激素水平。然而,目前还不清楚性腺状态如何，包括雄激素浓度,影响身体功能和未来的生育能力。这项研究的目的是为患有DMD的成年人发声，探索他们对性健康的看法，激素治疗,和生育能力。
方法：通过两个在线焦点小组从6名DMD成人中收集定性数据。参与者是通过探路者神经肌肉联盟和DuchenneUK招募的，如果他们患有DMD并且年龄在18岁或以上，则被邀请参加。对话被逐字转录，解释性范式被用于主题分析。
结果：确定的主要主题是（1）需要沟通和性健康信息，（2）处理潜在的恐惧拒绝，（3）包括性别在内的关系的身体障碍，（4）DMD中补充睾酮，（5）父母和生育能力。
结论：我们建议临床医生与患有DMD的年轻人一起工作，探讨睾酮治疗对他们的益处和他们个人的性健康需求。如果他们得到治疗，这应该伴随着心理支持的机会。这项工作强调了进一步研究的必要性，以确定补充睾酮在DMD成人中的作用及其对生育能力的影响以及对性健康的特定情感和实际支持的价值。
方法：通过两个在线焦点小组从6名DMD成人中收集定性数据。参与者是通过探路者神经肌肉联盟和DuchenneUK招募的，如果他们患有DMD并且年龄在18岁或以上，则被邀请参加。对话被逐字转录，解释性范式被用于主题分析。
结果：确定的主要主题是（1）需要沟通和性健康信息，（2）处理潜在的恐惧拒绝，（3）包括性别在内的关系的身体障碍，（4）DMD中补充睾酮，（5）父母和生育能力。
结论：我们建议临床医生与患有DMD的年轻人一起工作，探讨睾酮治疗对他们的益处和他们个人的性健康需求。如果他们得到治疗，这应该伴随着心理支持的机会。这项工作强调了进一步研究的必要性，以确定补充睾酮在DMD成人中的作用及其对生育能力的影响以及对性健康的特定情感和实际支持的价值。
