Facilitators and Barriers to Noninvasive Ventilation Adherence in Youth with Nocturnal Hypoventilation Secondary to Obesity or Neuromuscular Disease

Abstract

A commentary on this article appears in this issue on page 1355.

Understanding adherence to noninvasive ventilation in youth with Duchenne muscular dystrophy

“…In contrast, several pediatric studies have examined adherence to positive airway pressure (PAP) therapies for OSA. PAP adherence is often arbitrarily operationalized as ≥3 hours or ≥4 hours per night . A recent review found that the use of PAP therapy ranged 3.8 to 7.0 hours per night with the majority of children not using their machines nightly .…”

“…An important next step in the field of NIV and PAP therapy adherence is the identification of barriers to device use; this information can lead to the development of evidence‐based interventions for children with neuromuscular disease and DMD, in particular. To date, only one study has examined adherence barriers in four patients with neuromuscular disease . Adherence based on objective and self‐reported data was 75%.…”

Adherence and barriers to hyperinsufflation in children with congenital muscular dystrophy

“…Identifying the unique barriers that children and families with CMD face when engaging in hyperinsufflation is critical to improving adherence in the future. Barriers and adherence to therapies in children with NMD are poorly described, with the exception of a recent study by Ennis and coworkers that reported adherence to NIV in five obese children and four children with NMD . Potential barriers identified in the general adherence literature related to similar devices, include the following issues: physical mask discomfort, not using while away from home, forgetting, the child not feeling well, the child needing help with the device, and embarrassment …”

Weaning long term non‐invasive ventilation (NIV) therapy in children

“…Nonetheless, using non‐invasive support is probably much like other prescribed therapies for children with chronic conditions like asthma or cystic fibrosis, where we know that adherence with chronic therapies sit well below our expectations . Previous studies of “adequate” (4 h per night) adherence with non‐invasive therapies in children with chronic conditions such as neuromuscular disease or craniofacial abnormalities have ranged from 40% to 80% …”