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

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.