Home-monitoring of vital capacity in people with a motor neuron disease

Jochem Helleman,Anita Beelen,Jaap N E Bakers,Evelien Pirard,Leonard H Van Den Berg,Johanna M A Visser-Meily

doi:10.1007/s00415-022-10996-1

Jochem Helleman, Anita Beelen + Show 4 more

Open Access

https://doi.org/10.1007/s00415-022-10996-1

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Abstract

BackgroundHome-monitoring of spirometry has the potential to improve care for patients with a motor neuron disease (MND) by enabling early detection of respiratory dysfunction and reducing travel burden. Our aim was to evaluate the validity and feasibility of home-monitoring vital capacity (VC) in patients with MND.MethodsWe included 33 patients with amyotrophic lateral sclerosis, progressive muscular atrophy or primary lateral sclerosis who completed a 12-week home-monitoring protocol, consisting of 4-weekly unsupervised home assessments of VC and a functional rating scale. At baseline, during a home visit, patients/caregivers were trained in performing a VC test, and the investigator performed a supervised VC test, which was repeated at final follow-up during a second home visit. Validity of the unsupervised VC tests was evaluated by the differences between supervised and unsupervised VC tests, and through Bland–Altman 95% limits-of-agreement. Feasibility was assessed by means of a survey of user-experiences.ResultsThe 95% limits-of-agreement were [− 14.3; 11.7] %predicted VC, and 88% of unsupervised VC tests fell within 10%predicted of supervised VC. 88% of patients experienced VC testing as easy and not burdensome, however, 15% patients did not think their VC test was performed as well as in the clinic. 94% of patients would like home-monitoring of VC in MND care.DiscussionUnsupervised VC testing at home, with prior face-to-face training, is a valid and time-efficient method for the remote monitoring of respiratory function, and well-accepted by patients with MND and their caregivers.

Highlights

In patients with a motor neuron disease (MND), respiratory failure is the main cause of death [1, 2]
We considered a maximal difference of 10%predicted between supervised and unsupervised vital capacity (VC) as an acceptable limit of agreement, since this will allow healthcare professionals to determine a trend of VC over time when the VC is monitored at 4-weekly intervals
We included 33 patients with MND, with an average age of 60.5 years, 79% of whom were male. 76% were diagnosed with amyotrophic lateral sclerosis (ALS), 15% with progressive muscular atrophy (PMA) and 9% with primary lateral sclerosis (PLS), and 78.8% had spinal onset

Summary

Introduction

In patients with a motor neuron disease (MND), respiratory failure is the main cause of death [1, 2]. In current MND healthcare, respiratory function is monitored during regular visits to a multidisciplinary clinic Two drawbacks of this type of monitoring are that clinic visits can be time consuming and burdensome for patients with MND, and that patients have to visit the clinic irrespective of whether there is a decrease in respiratory function [9, 10]. Discussion Unsupervised VC testing at home, with prior face-to-face training, is a valid and time-efficient method for the remote monitoring of respiratory function, and well-accepted by patients with MND and their caregivers

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