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Understanding the experiences of lung volume recruitment among boys with Duchenne muscular dystrophy: A multicenter

Sherri L Katz1,2,3, Henrietta Blinder2, Dennis Newhook2

  • 1Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.

Pediatric Pulmonology
|September 14, 2022
PubMed

Insights

Lung volume recruitment (LVR) adherence is poor in boys with Duchenne muscular dystrophy (DMD). Strategies like education and clinician support can improve LVR use, balancing benefits against the treatment burden.

Area of Science:

  • Pediatric Pulmonology
  • Neuromuscular Diseases
  • Respiratory Therapy

Background:

  • Adherence to lung volume recruitment (LVR) is suboptimal in children with neuromuscular diseases, despite clinical guidelines.
  • Lung volume recruitment (LVR) is recommended for managing respiratory function in Duchenne muscular dystrophy (DMD).

Purpose of the Study:

  • To explore the experiences of boys with Duchenne muscular dystrophy (DMD), their families, and healthcare providers (HCPs) regarding LVR use.
  • To identify barriers and facilitators influencing adherence to LVR therapy in DMD patients.

Main Methods:

  • A multicenter qualitative study involving 11 boys with DMD, 11 parents, and 9 HCPs.
  • Semistructured interviews were conducted to gather insights on understanding, beliefs, barriers, and facilitators of LVR.
  • Thematic analysis was employed to analyze interview data, with a subanalysis comparing adherent and nonadherent children.

Main Results:

  • Seven key themes emerged: emotional impact, adaptation, perceived benefits, routine, family engagement, clinical resources, and equipment factors.
  • Strategies for improving adherence included education, demonstrating LVR benefits, and clinician support.
  • No significant thematic differences were found between children who were adherent and nonadherent to LVR.

Conclusions:

  • Despite positive experiences and benefits, barriers to LVR adherence persist in DMD.
  • Healthcare providers must balance early LVR introduction for adaptation with ensuring benefits outweigh the burden.
  • Strong clinician support is crucial for enhancing family engagement and adherence to LVR therapy.
Abstract

Keywords:
Duchenne muscular dystrophylung volume recruitmentpediatricqualitative

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