Tele-monitoring in paediatric and young home-ventilated neuromuscular patients: A multicentre case-control trial

Federica Trucco, Marina Pedemonte, Fabrizio Racca, Raffaele Falsaperla, Catia Romano, Anette Wenzel, Alessia D'Agostino, Angela Pistorio, Paola Tacchetti, Cristina Bella, Claudio Bruno, Carlo Minetti

Research output: Contribution to journalArticlepeer-review


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 languageEnglish
Pages (from-to)414-424
Number of pages11
JournalJournal of Telemedicine and Telecare
Issue number7
Publication statusPublished - Aug 2019


  • 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


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