Department of Clinical, Educational and Health Psychology, University College London, Gower Street, London, WC1E 6BT, UK.
Dubowitz Neuromuscular Centre, UCL GOS Institute of Child Health, 30 Guilford Street, London, WC1N 1EH, UK; NIHR Great Ormond Street Hospital Biomedical Research Centre, 30 Guilford St, London WC1N 1DP, London, UK.
Neuromuscul Disord. 2024 Jan;34:95-104. doi: 10.1016/j.nmd.2023.12.002. Epub 2023 Dec 9.
In this multi-methods study we explored the characteristics, causes and impact of anxiety in Duchenne muscular dystrophy (DMD) from the perspective of young males with DMD and their parents. Eight young males with DMD (7-18 years) and 14 parents participated in separate focus groups. Perspectives on anxiety were explored using semi-structured interview schedules. Themes were identified using Framework Analysis. Neurodevelopmental, emotional and behavioural symptom scores were obtained using standard instruments including the Strengths and Difficulties Questionnaire and Revised Children's Anxiety and Depression Scale. We identified six common anxiety characteristics: Catastrophic conclusions; Rigidly-held anxieties; Extreme distress; Social anxieties; Physical changes/needs; Unexpected/unfamiliar. Four further themes described influential systemic factors: Individual, Family, and Social responses and Physical environment and service contexts. All DMD participants had significantly higher total difficulties, emotional problems and impact scores than population norms. The Revised Children's Anxiety and Depression Scale showed low sensitivity in identifying anxiety symptoms. Fifty-seven percent (8/14) of parents who had wanted help for their son's anxiety were dissatisfied with the available support. In conclusion, anxiety can severely impact wellbeing and functioning of individuals with DMD. There are important nuances to consider when managing DMD-associated anxiety. We highlight the importance of multimodal assessment considering the multiple contexts within which anxiety arises.
在这项多方法研究中，我们从 DMD 男性青年及其父母的角度探讨了 Duchenne 肌营养不良症（DMD）中焦虑的特征、原因和影响。8 名 DMD 男性青年（7-18 岁）和 14 名家长参加了单独的焦点小组。使用半结构化访谈计划探讨了焦虑观点。使用框架分析确定主题。使用标准工具包括《长处和困难问卷》和《修订儿童焦虑和抑郁量表》获得神经发育、情绪和行为症状评分。我们确定了六种常见的焦虑特征：灾难性结论；固执的焦虑；极度痛苦；社交焦虑；身体变化/需求；意外/不熟悉。进一步描述了四个有影响力的系统性因素主题：个体、家庭和社会反应以及物理环境和服务背景。所有 DMD 参与者的总困难、情绪问题和影响评分均明显高于人口正常值。《修订儿童焦虑和抑郁量表》显示在识别焦虑症状方面的灵敏度较低。希望为儿子的焦虑寻求帮助的家长中，有 57%（8/14）对现有的支持不满意。总之，焦虑会严重影响 DMD 个体的幸福感和功能。在管理与 DMD 相关的焦虑时，需要考虑到重要的细微差别。我们强调了在考虑到焦虑产生的多个背景下进行多模式评估的重要性。
