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Factors associated with Noninvasive ventilation compliance in patients with ALS/MND
Journal article   Open access

Factors associated with Noninvasive ventilation compliance in patients with ALS/MND

C. E. Jackson, T. D. Heiman-Patterson, M. Sherman, Y. U. Daohai, E. J. Kasarskis and Nutrition NIV Study Grp
Amyotrophic lateral sclerosis and frontotemporal degeneration, v 22(S1)
30 Jul 2021
DOI: https://doi.org/10.1080/21678421.2021.1917617
PMID: 34348541
Featured in Collection :   UN Sustainable Development Goals @ Drexel
url
https://doi.org/10.1080/21678421.2021.1917617View
Published, Version of Record (VoR)CC BY V4.0,  Open

Abstract

amyotrophic lateral sclerosis compliance Noninvasive ventilation
Background: Although noninvasive ventilation (NIV) improves survival and quality of life (QOL) in ALS, use of NIV is suboptimal. Objective: To determine compliance with "early" NIV initiation, requisite for the feasibility of a large study of early NIV initiation, and examine factors impacting compliance. Methods: Seventy-three ALS participants with forced vital capacities (FVC) >50% were enrolled. Participants with FVC over 80% (Group 1) were initiated on NIV early (FVC between 80 and 85%). Participants with FVC between 50 and 80% (Group 2) started NIV at FVC between 50 and 55%. Symptom surveys, QOL scores, and NIV compliance (machine download documenting use ≥4 hours/night >60% of time) were collected following NIV initiation. Results: 53.6% of Group 1 and 50% of Group 2 were compliant 28 days following NIV initiation, with increased compliance over time. Participants who were unmarried, had lower income, lower educational attainment, or limited caregiver availability were less likely to be compliant. Bothersome symptoms in non-compliant participants included facial air pressure, frequent arousals with difficulty returning to sleep, and claustrophobia. Both compliant and noncompliant participants felt improved QOL with NIV; improvement was significantly greater in compliant participants. Conclusions: These data suggest ALS patients can comply with NIV early in their disease, and potentially benefit as evidenced by improved QOL scores, supporting both feasibility and need for a study comparing early versus late NIV initiation. Moreover, modifiable symptoms were identified that could be optimized to improve compliance. Further studies are needed to determine the impact of "early" intervention on survival and QOL.

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16 citations in Web of Science
17 citations in Scopus

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#3 Good Health and Well-Being

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Collaboration types
Domestic collaboration
Web of Science research areas
Clinical Neurology
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