Abstract Details

Title Survey Development to Assess for Barriers and Facilitators to Continuing Non-invasive Ventilation in Individuals with Amyotrophic Lateral Sclerosis

Topic Sleep

Presentation(s) S6 - Sleep (4:30 PM-4:42 PM)

Poster/Presentation
Number 006

Objective The objective of this study was to develop and refine a survey for individuals with amyotrophic lateral sclerosis and their care partners that assesses for barriers and facilitators to continuing non-invasive ventilation.

Background Amyotrophic lateral sclerosis is a rapidly progressive motor neuron disease that is typically fatal within 2-5 years, most commonly due to respiratory failure. Non-invasive ventilation can prolong survival and improve quality of life by treating respiratory insufficiency, although tolerability can interfere with adherence. There is a lack of research evaluating these facilitators and barriers to tolerance, particularly in a systematic way.

Design/Methods A questionnaire, based upon qualitative findings in a COM-B model framework, was pre-tested among survey experts, neuromuscular and sleep specialists, and individuals with amyotrophic lateral sclerosis, including their care-partners. Questionnaire development and validation included item development, revision based upon pre-testing, and assessment of face validity.

Results There were ten rounds of pre-testing iterations to revise the questionnaire to its final form, an 84-item questionnaire. These included language clarification in question stems and answer selections, avoidance of double-barreled questions, simplification of terminology, more specific terminology in branching questions when referencing question stems, acronym clarification, formatting of branching logic questions, re-ordering of items for clarity, optimized answer choice selection, as well as additional questions to better capture the experience of non-invasive ventilation. Face validity was reached. The final questionnaire includes sections that mirror the COM-B model: physical capability, psychological capability, physical opportunity, social opportunity, reflective motivation, and autonomic motivation.

Conclusions The development and validation of a questionnaire to evaluate the barriers and facilitators of continuing non-invasive ventilation in individuals with amyotrophic lateral sclerosis will allow for better assessment of risk factors and modifiable barriers to target, allowing increased tolerability and adherence, leading to improved survival and quality of life in these individuals.

Authors/Disclosures
Jennifer L. Marsella, MD (University of Rochester, Sleep Medicine) PRESENTER	Dr. Marsella has nothing to disclose.
Reza Y. Yousefi Nooraie, PhD	Dr. Yousefi Nooraie has nothing to disclose.
Scott McIntosh, PhD	Dr. McIntosh 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.

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