ABSTRACT

Introduction

Narcolepsy, characterized by excessive daytime sleepiness, is a debilitating lifelong sleep disorder for which there is no cure. Current pharmacological and nonpharmacological treatments directed toward symptom management may be suboptimal. This qualitative study explores the perspective of adolescents on therapeutic interventions for narcolepsy.

Methods

Semi-structured interviews with adolescents with narcolepsy were conducted from May to August 2019 at The Hospital for Sick Children in Toronto, Canada. Qualitative thematic analysis was utilized to generate themes emerging from the data.

Results

Eighteen adolescents with narcolepsy (age range = 10–17, mean age = 14.4 ± 2.0 years, 72% male) participated and 56% had cataplexy. Four prominent themes arose regarding therapeutic interventions for narcolepsy. Firstly, participants described that pharmacotherapy was moderately effective but did not fully relieve symptoms associated with narcolepsy. Secondly, while medications are the first line treatment for narcolepsy, many participants reported frustration regarding medication dependence and side effects. Thirdly, nonpharmacological strategies including scheduled sleep times and exercise were accepted and often employed. Lastly, adolescents desired more psychosocial support to address mental health sequelae of narcolepsy that were not fully managed by current treatment modalities.

Conclusions

Medications were perceived as moderately effective for managing narcolepsy but almost all participants expressed concerns with taking medications due to side effects. Adolescents valued the importance of more holistic care for their narcolepsy treatment such as psychosocial support and nonpharmacological modalities. Further anticipatory guidance regarding pharmacological side effect profiles and better integration with nonpharmacological modalities are needed to improve disease control in adolescent patients.

中文翻译：

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嗜睡症治疗：青少年的声音

摘要

介绍

发作性睡病以白天过度嗜睡为特征，是一种使人衰弱的终生睡眠障碍，无法治愈。目前针对症状管理的药物和非药物治疗可能不是最理想的。这项定性研究探讨了青少年对发作性睡病治疗干预的看法。

方法

2019 年 5 月至 2019 年 8 月在加拿大多伦多病童医院对患有发作性睡病的青少年进行了半结构化访谈。定性主题分析用于从数据中生成主题。

结果

18 名患有发作性睡病的青少年（年龄范围 = 10-17，平均年龄 = 14.4 ± 2.0 岁，72% 男性）参与其中，56% 患有猝倒症。关于嗜睡症的治疗干预，出现了四个突出的主题。首先，参与者描述了药物治疗效果适中，但并未完全缓解与发作性睡病相关的症状。其次，虽然药物是发作性睡病的一线治疗，但许多参与者报告说对药物依赖和副作用感到沮丧。第三，包括预定睡眠时间和运动在内的非药物策略被接受并经常使用。最后，青少年需要更多的社会心理支持来解决目前治疗方式无法完全控制的发作性睡病的心理健康后遗症。

结论

药物被认为对控制发作性睡病有一定的疗效，但几乎所有参与者都表示担心服用药物会产生副作用。青少年重视对其发作性睡病治疗进行更全面护理的重要性，例如社会心理支持和非药物治疗方式。为了改善青少年患者的疾病控制，需要对药理副作用谱和与非药物方式更好地整合的进一步预期指导。