TY - JOUR
T1 - Home-monitoring of vital capacity in people with a motor neuron disease
AU - Helleman, Jochem
AU - Bakers, Jaap N E
AU - Pirard, Evelien
AU - van den Berg, Leonard H
AU - Visser-Meily, Johanna M A
AU - Beelen, Anita
N1 - Funding Information:
This study was funded by the Netherlands ALS Foundation.
Publisher Copyright:
© 2022, The Author(s).
PY - 2022/7
Y1 - 2022/7
N2 - 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.
AB - 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.
KW - Amyotrophic lateral sclerosis
KW - Motor neuron disease
KW - Remote monitoring
KW - Respiratory function
KW - Validity
KW - Vital capacity
UR - http://www.scopus.com/inward/record.url?scp=85124296562&partnerID=8YFLogxK
U2 - 10.1007/s00415-022-10996-1
DO - 10.1007/s00415-022-10996-1
M3 - Article
C2 - 35129626
SN - 0340-5354
VL - 269
SP - 3713
EP - 3722
JO - Journal of Neurology
JF - Journal of Neurology
IS - 7
ER -