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.
|Number of pages||8|
|Journal||Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration|
|State||Published - 2021|
Bibliographical noteFunding Information:
This work was supported by NIH RO1 Number 3046960400 and the ALS Hope Foundation. NIV Sites–Drexel University College of Medicine: Terry Heiman-Patterson, MD, Michael Sherman, MD, Melonie Mitchell RPT, Roseanne Sattazahn RN; Beth Israel : Stephen N. Scelsa, MD, Theresa Imperato; SUNY Upstate University: Jeremy M. Shefner, MD, Ph.D, Mary Lou Watson; University of Colorado: Yvonne Rollins, MD, John Cumming; Henry Ford Hospital: Dan Newman, MD, Helen Foley; University of Miami: Ashok Verma, MD, Donald Koggan, MD, Julie Steele; University of Texas: Carlayne Jackson, MD, Pam Kittrell, RN Nutrition Sites–University of Kentucky: - Edward J. Kasarskis, MD, PhD–PI, Stephen Wells, Kathryn Vanderpool, RN, Christie Shrestha, MPH, Deborah Taylor, Marta Mendiondo, Ph.D, Richard Kryscio, Ph.D, Margaret Healey, Marsha Sams, Megan Thompson; Columbia: Hiroshi Mitsumoto, MD, FAAN, Daniel Bell; University of Vermont: Rup Tandan, MD, Chris Potter, Dwight Matthews; University of Utah: Mark Bromberg, MD, Summer Davis; Pennsylvania State University: Zachary Simmons, MD, FAAN, Beth Stephens, Ally Brothers Statistics Core–Temple University Lewis Katz School of Medicine : Daohai Yu, PhD, Xiaoning Lu MS.
© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
- Noninvasive ventilation
- amyotrophic lateral sclerosis
ASJC Scopus subject areas
- Clinical Neurology