Drs. Jean-Philippe Chaput and Annick Buchholz are authors on a paper, “Facilitators and barriers to noninvasive ventilation adherence in youth with nocturnal hypoventilation secondary to obesity or neuromuscular disease,” that was recently published in the Journal of Clinical Sleep Medicine. Citation details and a summary of the paper are below.
Ennis J, Rohde K, Chaput JP, Buchholz A, Katz SL. Facilitators and barriers to noninvasive ventilation adherence in youth with nocturnal hypoventilation secondary to obesity or neuromuscular disease. J Clin Sleep Med 2015;11(12):1409-1416.
ABSTRACT: 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.
