Abstract Details

Title Barriers and facilitators to continuing non-invasive ventilation use in individuals with amyotrophic lateral sclerosis

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P3 - Poster Session 3 (5:30 PM-6:30 PM)

Poster/Presentation
Number 11-009

Background ALS is a rapidly progressive motor neuron disease, with fatality often due to respiratory failure. Adherence to NIV in ALS is a predictor for survival. However, at least one-third of these individuals will discontinue therapy. Factors contributing to poor tolerance versus adherence to NIV are unclear.

Objective

To identify barriers and facilitators to continuing non-invasive ventilation (NIV) in individuals with amyotrophic lateral sclerosis (ALS).

Design/Methods Semi-structured in-depth interviews with eight individuals with ALS and respiratory insufficiency and seven of their caregivers were conducted at the University of Rochester ALS clinic to explore perceived barriers and facilitators to continuing NIV after initiation. Interviews were audio-recorded, transcribed, and coded. The major barriers/facilitators were identified based on the themes that emerged from the data.

Results

Four main themes, along with subthemes, were identified.

1) Participant characteristics and motivation: disease characteristics, past NIV use, motivation, self-advocacy, and understanding of NIV/respiratory insufficiency.

2) NIV unit itself and the feel of it: NIV type and potential need for a second unit (volume-assured pressure support preferred compared to bilevel PAP therapy), NIV effects – “I feel better”, NIV attitudes – “Freaked out” (anxiety/fear, trust) and personalization, acclimation, NIV settings and equipment – pressure settings, mask (fit/type/claustrophobia/leak), dryness/secretions/congestion/irritation, and convenience/inconvenience (noise/brightness/cleaning/portability).

3) Support system from a) Family: advocacy, encouragement/couching, motivator versus burden, and assistance; b) Medical personnel: education provided, respiratory supply company interactions, availability/invitation to ask for help/feeling cared for, patient/provider relationship, and provider-directed troubleshooting.

4) Process/organization: set up logistics, troubleshooting process (follow-up/troubleshooting/process organization), timing, financial, “What to expect down the line” versus “A lot,” and frustration (“Just another layer of real”) versus ease.

Conclusions

Clear barriers and facilitators to continuing NIV in individuals with ALS were identified, many of which are modifiable. This is the first step in creating targeted interventions to improve tolerance and address barriers leading to NIV discontinuation.

Authors/Disclosures
Jennifer L. Marsella, MD (University of Rochester, Sleep Medicine) PRESENTER	Dr. Marsella has nothing to disclose.
Cynthia Gibson, NP (University of Rochester Medical Center)	Ms. Gibson has received personal compensation in the range of $0-$499 for serving as a Consultant for Amylx.
Emma Ciafaloni, MD, FAAN (University of Rochester Medical Center)	Dr. Ciafaloni has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Argenx, Alexion, Sarepta, UCB, Hoffman-LaRoche, Biogen. Dr. Ciafaloni has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis, AnnJi Pharmaceutical, ML-BIO, Avidity. The institution of Dr. Ciafaloni has received research support from CDC, CureSMA, FDA, Orphazyme, Sarepta, PCORI, Neurogene. Dr. Ciafaloni has received publishing royalties from a publication relating to health care.