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

doi:10.1080/21678421.2021.1917617

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

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Abstract

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.

Original language	English
Pages (from-to)	40-47
Number of pages	8
Journal	Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volume	22
Issue number	S1
DOIs	https://doi.org/10.1080/21678421.2021.1917617
State	Published - 2021

Bibliographical note

Publisher Copyright:
© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Funding

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.

Funders	Funder number
Henry Ford Hospital
Roseanne Sattazahn RN
SUNY Upstate Medical University
Texas AandM University
National Institutes of Health (NIH)	3046960400
National Institutes of Health (NIH)
ALS Hope Foundation
Miami Clinical and Translational Science Institute, University of Miami
University of Kentucky
University of Utah Health
Drexel University College of Medicine
The Pennsylvania State University

Keywords

Noninvasive ventilation
amyotrophic lateral sclerosis
compliance

ASJC Scopus subject areas

Neurology
Clinical Neurology

Access to Document

10.1080/21678421.2021.1917617

Cite this

@article{0e9612d447744aa89a0f55df3fd39fd3,

title = "Factors associated with Noninvasive ventilation compliance in patients with ALS/MND",

abstract = "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.",

keywords = "Noninvasive ventilation, amyotrophic lateral sclerosis, compliance",

author = "Jackson, {C. E.} and Heiman-Patterson, {T. D.} and M. Sherman and Daohai, {Y. U.} and Kasarskis, {E. J.} and Terry Heiman-Patterson and Sherman, {Michael S.} and Melonie Mitchell and Roseanne Sattazahn and Scelsa, {Stephen N.} and Theresa Imperato and Shefner, {Jeremy M.} and Watson, {Mary Lou} and Yvonne Rollins and John Cumming and Dan Newman and Helen Foley and Ashok Verma and Donald Koggan and Julie Steele and Carlayne Jackson and Pam Kittrell and Kasarskis, {Edward J.} and Stephen Wells and Kathryn Vanderpool and Christie Shrestha and Deborah Taylor and Marta Mendiondo and Richard Kryscio and Margaret Healey and Marsha Sams and Megan Thompson and Hiroshi Mitsumoto and Daniel Bell and Rup Tandan and Chris Potter and Dwight Matthews and Mark Bromberg and Summer Davis and Zachary Simmons and Beth Stephens and Ally Brothers and Daohai Yu and Xiaoning Lu",

note = "Publisher Copyright: {\textcopyright} 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.",

year = "2021",

doi = "10.1080/21678421.2021.1917617",

language = "English",

volume = "22",

pages = "40--47",

number = "S1",

}

TY - JOUR

T1 - Factors associated with Noninvasive ventilation compliance in patients with ALS/MND

AU - Jackson, C. E.

AU - Heiman-Patterson, T. D.

AU - Sherman, M.

AU - Daohai, Y. U.

AU - Kasarskis, E. J.

AU - Heiman-Patterson, Terry

AU - Sherman, Michael S.

AU - Mitchell, Melonie

AU - Sattazahn, Roseanne

AU - Scelsa, Stephen N.

AU - Imperato, Theresa

AU - Shefner, Jeremy M.

AU - Watson, Mary Lou

AU - Rollins, Yvonne

AU - Cumming, John

AU - Newman, Dan

AU - Foley, Helen

AU - Verma, Ashok

AU - Koggan, Donald

AU - Steele, Julie

AU - Jackson, Carlayne

AU - Kittrell, Pam

AU - Kasarskis, Edward J.

AU - Wells, Stephen

AU - Vanderpool, Kathryn

AU - Shrestha, Christie

AU - Taylor, Deborah

AU - Mendiondo, Marta

AU - Kryscio, Richard

AU - Healey, Margaret

AU - Sams, Marsha

AU - Thompson, Megan

AU - Mitsumoto, Hiroshi

AU - Bell, Daniel

AU - Tandan, Rup

AU - Potter, Chris

AU - Matthews, Dwight

AU - Bromberg, Mark

AU - Davis, Summer

AU - Simmons, Zachary

AU - Stephens, Beth

AU - Brothers, Ally

AU - Yu, Daohai

AU - Lu, Xiaoning

PY - 2021

Y1 - 2021

N2 - 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.

AB - 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.

KW - Noninvasive ventilation

KW - amyotrophic lateral sclerosis

KW - compliance

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U2 - 10.1080/21678421.2021.1917617

DO - 10.1080/21678421.2021.1917617

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SN - 2167-8421

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JO - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

JF - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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ER -

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

Abstract

Bibliographical note

Funding

Keywords

ASJC Scopus subject areas

Access to Document

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