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

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.

Keywords

Home telecare telecare telerehabilitation

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References

Eagle

Baudouin

Chandler

et al.

Survival in Duchenne muscular dystrophy: Improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 2002; 12: 926–929.

Racca

Bonati

Del Sorbo

et al.

Invasive and non-invasive long-term mechanical ventilation in Italian children. Minerva Anestesiol 2011; 77: 892–901.

American Thoracic Society. Statement on home care for patients with respiratory disorders. Am J Respir Crit Care Med 2005; 171: 1443–1464.

Ottonello

Mastella

Franceschi

et al.

Spinal muscular atrophy type 1: Avoidance of hospitalization by respiratory muscle support. Am J Phys Med Rehabil 2011; 90: 895–900.

Vianello

Savoia

Pipitone

et al.

“Hospital at home” for neuromuscular disease patients with respiratory tract infection: A pilot study. Respir Care 2013; 58: 2061–2068.

Gregoretti

Ottonello

Chiarini Testa

et al.

Survival of patients with spinal muscular atrophy type 1. Pediatrics 2013; 131: e1509–e1514.

Vitacca

Bianchi

Guerra

et al.

Tele-assistance in chronic respiratory failure patients: A randomised clinical trial. Eur Respir J 2009; 33: 411–418.

Vitacca

Comini

Tentorio

et al.

A pilot trial of telemedicine-assisted, integrated care for patients with advanced amyotrophic lateral sclerosis and their caregivers. J Telemed Telecare 2010; 16: 83–88.

Vitacca

Comini

Assoni

et al.

Tele-assistance in patients with amyotrophic lateral sclerosis: long term activity and costs. Disabil Rehabil Assist Technol 2012; 7: 494–500.

10.

Garuti

Bagatti

Verucchi

et al.

Pulmonary rehabilitation at home guided by telemonitoring and access to healthcare facilities for respiratory complications in patients with neuromuscular disease. Eur J Phys Rehabil Med 2013; 49: 51–57.

11.

Bertini

Picariello

Gorini

et al.

Telemonitoring in chronic ventilatory failure: A new model of surveillance, A pilot study. Monaldi Arch Chest Dis 2012; 77: 57–66.

12.

Chatwin

Hawkins

Panicchia

et al.

Randomised crossover trial of telemonitoring in chronic respiratory patients (TeleCRAFT trial). Thorax 2016; 71: 305–311.

13.

Pinto

Almeida

Pinto

et al.

Home telemonitoring of non-invasive ventilation decreases healthcare utilisation in a prospective controlled trial of patients with amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry 2010; 81: 1238–1242.

14.

Ambrosino

Vitacca

Dreher

et al.

Tele-monitoring of ventilator-dependent patients: A European Respiratory Society Statement. ERS Tele-Monitoring of Ventilator-Dependent Patients Task Force. Eur Respir J 2016; 48: 648–663.

15.

Gomez-Merino

Bach

. Duchenne muscular dystrophy: Prolongation of life by noninvasive ventilation and mechanically assisted coughing. Am J Phys Med Rehabil 2002; 81: 411–415.

16.

Chatwin

Bush

Simonds

. Outcome of goal-directed non-invasive ventilation and mechanical insufflation/exsufflation in spinal muscular atrophy type I. Arch Dis Child 2011; 96: 426–432.

17.

Bushby

Finkel

Birnkrant

et al.

Diagnosis and management of Duchenne muscular dystrophy, part 2: Implementation of multidisciplinary care. Lancet Neurol 2010; 9: 177–189.

18.

Vitacca

Paneroni

Trainini

et al.

At home and on demand mechanical cough assistance program for patients with amyotrophic lateral sclerosis. Am J Phys Med Rehabil 2010; 89: 401–406.

19.

Novak

Guest

. Application of a multidimensional caregiver burden inventory. Gerontologist 1989; 29: 798–803.