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

• Published in: Journal of neurology Vol. 269; no. 7; pp. 3713 - 3722
• Main Authors: Helleman, Jochem, Bakers, Jaap N. E., Pirard, Evelien, van den Berg, Leonard H., Visser-Meily, Johanna M. A., Beelen, Anita
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01.07.2022; Springer Nature B.V
• Subjects: Amyotrophic lateral sclerosis; Atrophy; Caregivers; Medicine; Medicine & Public Health; Motor neuron diseases; Motor neurone disease; Neurology; Neuroradiology; Neurosciences; Original Communication; Respiration; Respiratory function; Validity; Amyotrophic lateral sclerosis; Respiratory function; Vital capacity; Remote monitoring; Motor neuron disease
• ISSN: 0340-5354; 1432-1459
• DOI: 10.1007/s00415-022-10996-1

Background Home-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. Methods We 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. Results The 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. 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.