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EnglishIntroduction: 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.
| Autori: | |
| Titolo: | Tele-monitoring in paediatric and young home-ventilated neuromuscular patients: A multicentre case-control trial |
| Autori: | Trucco, Federica; Pedemonte, Marina; Racca, Fabrizio; Falsaperla, Raffaele; Romano, Catia; Wenzel, Anette; D’Agostino, Alessia; Pistorio, Angela; Tacchetti, Paola; Bella, Cristina; Bruno, Claudio; Minetti, Carlo |
| Data di pubblicazione: | 2018 |
| Numero degli autori: | 12 |
| Supporto: | ELETTRONICO |
| Lingua: | Inglese |
| Parole Chiave: | Home telecare; telecare; telerehabilitation; Health Informatics |
| Digital Object Identifier (DOI): | http://dx.doi.org/10.1177/1357633X18778479 |
| Rivista: | JOURNAL OF TELEMEDICINE AND TELECARE |
| Volume: | 25 |
| Codice identificativo Scopus: | 2-s2.0-85048143457 |
| Codice identificativo Pubmed: | 29865934 |
| IF: | si |
| Codice identificativo ISI: | WOS:000476521600003 |
| Pagina iniziale: | 414 |
| Pagina finale: | 424 |
| Numero di pagine: | 11 |
| Editore: | SAGE Publications Ltd |
| Data di presentazione: | 2020-02-24T11:59:33Z |
| 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. |
| Appare nelle tipologie: | 01.01 - Articolo su rivista |
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