Abstract
INTRODUCTION: Tele-monitoring (TM) has proved effective in the home management of adult ventilator-dependent neuromuscular disease (NMD) patients. We aimed to evaluate a 2-year longitudinal multicentre TM trial designed for young ventilated NMD patients in terms of feasibility, home management of exacerbations and caregivers' burden.
METHODS: The TM trial protocol included patients' weekly scheduled overnight home-recording of SpO2, heart rate and ventilation and their transmission to each TM centre the following morning. Overnight data were reviewed by non-physicians and calls to families made to assess clinical condition. If clinical conditions (assessed by a scoring system) or overnight parameters worsened, either unscheduled transmissions or calls were activated and managed by non-physicians or medical team according to severity. Hospitalisations were compared with those of TM patients prior to TM start and with those of age-disease-severity-matched controls. Scores from the Caregiver Burden Inventory (CBI) questionnaire pre- and post-TM were compared.
RESULTS: Forty-eight patients were enrolled, 30 males, median age 16.4 years (interquartile range (IQR) 8.9-22.1), median ventilation/day 10.5 h (IQR 8-16). Exacerbations in TM patients did not differ (59 versus 53; p = 0.15) from controls. Hospitalisations were significantly reduced in TM patients when compared with those prior to TM (11 versus 24, p = 0.04) and to controls (11 versus 21, p = 0.03). Median hospitalisation length was significantly lower in TM patients than controls (6 versus 7 days, p = 0.03). Caregivers satisfaction was excellent whereas no significant changes in CBI were seen (32.5 versus 35.5, p = 0.06).
DISCUSSION: TM was effective in improving the home management of respiratory exacerbations in young ventilated NMD patients and overall well tolerated.
Original language | English |
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Pages (from-to) | 414-424 |
Number of pages | 11 |
Journal | Journal of Telemedicine and Telecare |
Volume | 25 |
Issue number | 7 |
DOIs | |
Publication status | Published - Aug 2019 |
Keywords
- Adolescent
- Caregivers/psychology
- Case-Control Studies
- Child
- Female
- Heart Rate/physiology
- Hospitalization/statistics & numerical data
- Humans
- Longitudinal Studies
- Male
- Neuromuscular Diseases/physiopathology
- Oxygen/blood
- Respiration, Artificial/methods
- Telemetry/methods
- Young Adult