Adherence with noninvasive ventilation (NIV) in adults with nocturnal hypoventilation secondary to obesity or neuromuscular disorder (NMD) is problematic,1 so what does it take to improve adherence in already known non-compliant population—adolescents 12 years and up, with these same issues. We know that there is significant morbidity and mortality in patients with underlying nocturnal hypoventilation secondary to obesity or NMD left untreated,2 and there is longitudinal evidence showing improvement in quality of life and morbidity and mortality in youth when NIV initiation is successful.3–6
However there are many barriers which must be overcome for successful initiation and use of NIV long-term home care.7,8 It is important to pinpoint and overcome barriers to initiation of NIV in both youths and adults, as an early pattern of adherence to CPAP therapy is a significant predictor of subsequent adherence.9
In the youth population, there is anecdotal evidence that compliance is better in youth with NMD versus those with underlying obesity. This article from Ennis et al.10 aims to study these factors relating to adherence to bilevel NIV in these two diverse populations, which may help improve compliance not only in youths with underlying obesity but perhaps adults as well.
The authors surveyed youths 12 years and up with nocturnal hypoventilation diagnosed on polysomnography and managed with bilevel NIV, who had either concurrent obesity (body mass index ≥ 95th percentile) or neuromuscular disease (dystrophinopathies, spinal muscular atrophy, or myotonic dystrophy). When available, dyads of primary caregivers and youths were enrolled, with each interviewed individually. In cases of youths with intellectual disabilities that precluded meaningful participation in the interviews, only caregivers were interviewed. Not surprisingly, the authors found that factors associated with bilevel NIV adherence included aspects related to the youths themselves, their caregivers, the health-care team, and the equipment. Youths were more likely to use bilevel NIV if they had a previous positive experience with nocturnal ventilator therapy, had subjective improvement in symptoms of nocturnal hypoventilation, and/or viewed bilevel NIV as similar in quality to other medical treatments. Those who adapted early to bilevel NIV and had little early difficulty with use were more likely to be adherent. The knowledge and attitudes of the youths and caregivers promoted adherence, particularly an understanding of nocturnal hypoventilation and its consequences (both long-term and short-term) as well as motivation to improve their health.
This is an important study investigating the barriers and solutions to improved bilevel NIV compliance in youths and likely with correlates in adults. The initial physical experience of the initiation of the NIV (be it youth or adult), buy-in from the youth or adult, patient and family education, and follow-up from the sleep center can help to increase adherence and satisfaction with NIV in a myriad of adult and youth NIV patients. And this will become an ever increasing important medical care issue as advances in NIV technology and application have allowed more pediatric and adult patients with underlying nocturnal hypoventilation secondary to obesity or NMD the potential for long-term home NIV care outside of a hospital or skilled nursing facility.4,5
The authors have indicated no financial conflicts of interest.
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