肥胖或神经肌肉疾病继发夜间通气不足的青少年无创通气依从性的促进因素和障碍
Facilitators and Barriers to Noninvasive Ventilation Adherence in Youth with Nocturnal Hypoventilation Secondary to Obesity or Neuromuscular Disease.
作者信息
Ennis Jonathan, Rohde Kristina, Chaput Jean-Philippe, Buchholz Annick, Katz Sherri Lynne
机构信息
The University of British Columbia, Vancouver, British Columbia, Canada.
Clinical Research Unit, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
出版信息
J Clin Sleep Med. 2015 Dec 15;11(12):1409-16. doi: 10.5664/jcsm.5276.
OBJECTIVE
Many youth struggle with adherence to bilevel noninvasive ventilation (NIV), often shortly after initiation of treatment. Anecdotal evidence suggests youths with comorbid obesity struggle with adherence while youths with comorbid neuromuscular disease demonstrate better adherence rates. The objective of this study was to explore factors relating to bilevel NIV adherence, and to compare these between youths with underlying obesity or neuromuscular disease.
METHODS
An exploratory qualitative approach was used to examine youth and caregivers' experiences with and perceptions of bilevel NIV. Semi-structured interviews (n = 16) of caregivers and youths were conducted. Youths 12 years and older with nocturnal hypoventilation diagnosed on polysomnography and managed with bilevel NIV, with either concurrent obesity or neuromuscular disease were included. Thematic analysis of interview data was conducted using qualitative analysis software.
RESULTS
Factors associated with positive bilevel NIV adherence included previous encouraging experiences with therapy; subjective symptom improvement; familiarity with medical treatments; understanding of nocturnal hypoventilation and its consequences; family and health-care team support; and early adaptation to treatments. Factors associated with poor bilevel NIV adherence included previous negative experiences with therapy, negative attitude towards therapy; difficulty adapting; perceived lack of support from family or health-care team; fear/embarrassment regarding treatment; caregivers not being health-minded; technical issues; side effects; and a lack of subjective symptom improvement.
CONCLUSIONS
The dimensions which most affect adherence to bilevel NIV are those which contribute to youths' conception of feeling "well" or "unwell." Adherence to treatment may hinge largely on the way in which NIV is initially experienced and framed.
COMMENTARY
A commentary on this article appears in this issue on page 1355.
目的
许多青少年在坚持使用双水平无创通气（NIV）方面存在困难，通常在治疗开始后不久就出现这种情况。轶事证据表明，患有肥胖症合并症的青少年在坚持治疗方面存在困难，而患有神经肌肉疾病合并症的青少年则表现出较高的坚持率。本研究的目的是探讨与双水平NIV坚持相关的因素，并比较患有潜在肥胖症或神经肌肉疾病的青少年之间的这些因素。
方法
采用探索性定性方法来研究青少年及其照顾者使用双水平NIV的经历和看法。对照顾者和青少年进行了半结构化访谈（n = 16）。纳入年龄在12岁及以上、经多导睡眠图诊断为夜间通气不足并使用双水平NIV治疗、同时患有肥胖症或神经肌肉疾病的青少年。使用定性分析软件对访谈数据进行主题分析。
结果
与双水平NIV坚持良好相关的因素包括以前有过鼓舞人心的治疗经历；主观症状改善；熟悉医疗治疗；了解夜间通气不足及其后果；家庭和医疗团队的支持；以及对治疗的早期适应。与双水平NIV坚持不佳相关的因素包括以前有过负面的治疗经历、对治疗的消极态度；难以适应；感觉缺乏家庭或医疗团队的支持；对治疗的恐惧/尴尬；照顾者没有健康意识；技术问题；副作用；以及主观症状没有改善。
结论
最影响双水平NIV坚持的因素是那些影响青少年对“感觉良好”或“感觉不适”的认知的因素。治疗的坚持可能很大程度上取决于最初体验和看待NIV的方式。
评论
关于本文的一篇评论发表在本期第1355页。
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