Feasibility study of respiratory function home monitoring for patients with Myasthenia Gravis

Abstract

Background: Myasthenia gravis (MG) is a rare and chronic autoimmune neuromuscular disease that causes weakness among skeletal muscles responsible for mobility and breathing. Individuals with MG who have difficulty breathing may need to schedule an emergent provider visit where a negative inspiratory force (NIF) measurement test is performed to measure respiratory strength. Purpose: Examine the feasibility of individuals with MG to perform NIF respiratory function monitoring in the home setting and determine its impact on their perceived quality of life. Methods: This is a quantitative one-group pretest-posttest study of 30 individuals (18–75 years old) who carry the diagnosis of MG and have been stable with treatment for at least 30 days. Participants completed the Brunnsviken Brief Quality of Life Scale (BBQ-LS) and the System Usability Scale (SUS) prestudy. Participants were required to independently perform and record their NIF measurements twice daily for 14 days. After completing the 14 days, participants completed the BBQ-LS, SUS, and an end-of-study survey. Results: There was a significant difference in BBQ-LS scores at baseline (M = 62.97, SD = 17.84) and poststudy (M = 98.2, SD = 13.63) (t[29] = −5.39, p <.000). System Usability Scale scores were significantly different at baseline (M = 77.25, SD = 11.05) than at study completion (M = 94.42, SD = 5.64) (t[29], = −8.04, p = .000). Conclusion: Study results indicate that it is feasible for individuals with MG to perform NIF readings in the home setting and demonstrated an increase in the perceived quality of life. Implications: Future large-scale studies can help determine the adoption of handheld NIF monitoring at home for individuals with MG.

Expert consensus recommendations for improving and standardising the assessment of patients with generalised myasthenia gravis

“…Online questionnaires and surveys, such as the MG-ADL, MG-QoL-15r and 36-Item Short Form Health Survey (SF-36), incorporate measures of fatigue, physical symptoms and HRQoL [3,24,27], with MG-QoL-15r scores obtained by telephone demonstrating consistency with those obtained in the clinic [28]. Patients are also able to perform negative inspiratory force measurement tests at home, which can give a good indication of respiratory strength and function [29].…”