4.7 Article

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

Journal

JOURNAL OF NEUROLOGY
Volume 269, Issue 7, Pages 3713-3722

Publisher

SPRINGER HEIDELBERG
DOI: 10.1007/s00415-022-10996-1

Keywords

Motor neuron disease; Amyotrophic lateral sclerosis; Respiratory function; Vital capacity; Remote monitoring; Validity

Funding

  1. Netherlands ALS Foundation

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Home-monitoring of vital capacity has the potential to improve care for patients with motor neuron disease by enabling early detection of respiratory dysfunction and reducing travel burden. This study evaluated the validity and feasibility of home-monitoring vital capacity in patients with MND, and found that unsupervised vital capacity testing at home is a valid and well-accepted method for remote monitoring of respiratory function.
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.

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