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Journal Information
Vol. 38. Issue 1.
Pages 59-61 (January - February 2023)
Vol. 38. Issue 1.
Pages 59-61 (January - February 2023)
Letter to the Editor
Open Access
Telematic adaptation to home mechanical ventilation in patients with amyotrophic lateral sclerosis
Adaptación telemática a la ventilación mecánica domiciliaria en pacientes con esclerosis lateral amiotrófica
A. Balañáa,b, M.Á. Rubioa,b, B. Bertrana,b, J. Martínez Llorensa,b,c,d,
Corresponding author

Corresponding author.
a Servicio de Neumología, Hospital del Mar, Cataluña, Spain
b Unidad Multidisciplinar de ELA, Cataluña, Spain
c CEXS, Universitat Pompeu Fabra, Cataluña, Spain
d CIBER de Enfermedades Respiratorias (CIBERES), ISC III. Madrid, Spain
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Respiratory involvement is a decisive factor in patient survival in amyotrophic lateral sclerosis (ALS); home mechanical ventilation (HMV) is the treatment of choice for these patients.1,2 Although there is no consensus on the optimal moment for starting HMV,1,3 adaptation to this treatment is always performed at the healthcare centre, most frequently on an outpatient basis and in some cases during hospitalisation.1,3

During the first peak of the COVID-19 pandemic, mobility and access to hospitals was greatly restricted in Spain, leading to the implementation of telemedicine in all medical specialties, including neurology.4 In this context, from June 2020 to August 2021, we reviewed the HMV adaptation programme for patients with ALS, with a view to introducing adaptation via telemedicine. A total of 12 patients (5 men and 7 women) with a highly variable degree of functional impairment (ALSFRS-R scores of 17–43) underwent adaptation to HMV via telemedicine. During an initial in-person consultation at the multidisciplinary ALS unit, all patients were informed about the need to start HMV and had the opportunity to ask questions about the treatment.

HMV was indicated due to impaired pulmonary function in 10 patients and as an intermediate step before placement of a gastrostomy tube in the remaining 2. Ventilators were brought to the patients’ homes by a company providing home respiratory care. The ventilators used were bilevel positive airway pressure (BiPAP) devices that record usage and efficacy data on a digital platform. This platform allows physicians to monitor and adjust ventilation parameters.

After the devices were delivered to patients’ homes, a respiratory physiotherapist made a video call with each patient and/or their caregiver to explain the basic management of the ventilator and how to place and remove the mask. These video calls lasted 30–50 minutes (median, 42 minutes).

A second video call was made after 2 nights of use; during a structured interview, the physiotherapist enquired about any symptoms of discomfort and presence of facial pressure ulcers caused by the mask, and efficacy data were reviewed.

After the second video call, ventilation parameters had to be adjusted in 6 patients due to insufficient night-time ventilation. In these cases, additional video calls were performed every 48 hours to conduct a structured interview and review ventilation parameters, until satisfactory ventilation throughout the night was achieved. A median of 3 video calls (range, 2–5) were held per patient.

Subsequently, a month after the last video call, we reviewed usage (hours of use) and efficacy data via the digital platform. Only one patient used the ventilator for less than 4 hours/day. The efficacy of HMV was adequate in all cases. An additional video call was performed; none of the patients reported discomfort associated with HMV or facial pressure ulcers. None of the patients required an in-person consultation at the hospital for adaptation to HMV (Table 1).

Table 1.

Clinical data from patients with amyotrophic lateral sclerosis undergoing adaptation of home mechanical ventilation via telemedicine and 1-month efficacy data.

Clinical data  Pulmonary functionBaseline nocturnal oximetryBaseline ABG FiO2 0.21Ventilation parametersVentilation efficacy
Sex  ALSFR-R  Onset  Age (years)  BMI (kg/m2VC, % pred.  VC, mL  SNIP, cm H2PCF, L/min  CT90%  ODI  SpO2, mean  pH  PaCO2, mm Hg  PaO2, mm Hg  Ventilation mode  IPAP, cm H2EPAP, cm H2Usage, h/day  Leakage, L/min  AHI  MV, L/min 
Man  42  Bulbar  65  23.10  69  2530  38  240  4.2  4.2  93.9  7.44  34.6  95  BiPAP  8.3  5.29  3.3  7.0 
Man  34  Spinal  69  28.50  108  3580  NA  440  72.0  20.5  88.6  7.40  41.0  76  BiPAP  10  6.7  0.22  2.7  8.0 
Man  18  Bulbar  69  18.90  NA  NA  46  160  NA  NA  NA  7.40  36.4  79  BiPAP  10  5.5  0.74  6.1  9.9 
Man  26  Spinal  54  21.40  42  1790  32  250  0.0  4.3  93.9  7.40  33.0  93  BiPAP  2.3  2.40  1.4  7.6 
Man  25  Bulbar  47  20.60  54  2090  59  320  2.4  7.3  97.6  7.45  38.9  103  BiPAP  10  5.1  0.40  0.5  8.5 
Woman  28  Bulbar  68  28.80  34  900  63  170  13.0  6.4  92.0  7.37  39.7  122  BiPAP  6.4  4.02  9.0  6.0 
Woman  27  Spinal  78  18.80  50  1010  10  160  3.7  4.2  92.4  7.42  39.7  90  BiPAP  10  5.4  1.20  1.1  6.4 
Woman  43  Bulbar  81  25.90  72  1160  90  330  1.9  3.4  93.0  7.41  37.2  79  BiPAP  5.3  0.39  10.8  4.7 
Woman  24  Bulbar  77  23.00  34  720  18  200  NA  NA  NA  7.44  45.7  71  BiPAP  16  6.5  5.00  5.0  6.7 
Woman  29  Bulbar  58  23.50  21  680  21  150  62.5  9.0  89.0  7.42  40.1  76  BiPAP  7.4  2.00  5.2  5.0 
Woman  24  Spinal  70  26.90  68  1780  44  260  38.6  11.9  89.7  7.42  40.7  87  BiPAP  12  4.5  0.00  1.2  7.7 
Woman  17  Bulbar  59  27.89  NA  NA  NA  NA  NA  NA  NA  7.47  48.9  86  BiPAP  7.2  1.00  7.3  4.0 

% pred.: % predicted value; AHI: apnoea-hypopnoea index; ALSFR-R: Amyotrophic Lateral Sclerosis Functional Rating Scale; BiPAP: bilevel positive airway pressure; BMI: body mass index; CT90%: cumulative time at SaO2 < 90%; EPAP: expiratory positive airway pressure; FiO2: fraction of inspired oxygen; IPAP: inspiratory positive airway pressure; MV: minute ventilation; NA: not assessed; ODI: oxygen desaturation index; PaCO2: partial pressure of carbon dioxide; PaO2: partial pressure of oxygen; PCF: peak cough flow; SNIP: sniff nasal inspiratory pressure; SpO2: pulse oximetry; VC: vital capacity.

Tele-monitoring of HMV is now widespread5; however, no official recommendations have been issued for telemedicine-based adaptation to this treatment.6 Clinical need and the context of the pandemic led to the creation of a specific protocol. In addition to the information gathered during video calls with patients, the use of home ventilators with an integrated system for data collection and transmission is essential for obtaining objective feedback about the efficacy of ventilation. Telemedicine, defined as the provision of healthcare through communication technologies,7 also presents ethical challenges, such as maintaining quality and safety standards, the digital divide, patient acceptance,8 and continuity of care, all of which could weaken patient-physician relationships.9

Our study does not provide a sufficient level of evidence about the efficacy of telemedicine-based adaptation to HMV as compared to in-person adaptation, given the small size of our sample. However, it does serve as a starting point as it demonstrates the plausibility of adaptation via telemedicine, a particularly necessary approach in a patient group with significant mobility issues.


This study received no funding of any kind.

Conflicts of interest

The authors have no conflicts of interest to declare.


We would like to thank Anna Guillén-Solà and Montserrat Villatoro, for the care provided to all patients attended at the multidisciplinary ALS unit; Francisco Leiva, for his support in the respiratory management of patients with home mechanical ventilation; and Griselda Esteve Plantalech and Oscar García Mariñoso, for their administrative support.

R.G. Miller, C.E. Jackson, E.J. Kasarskis, J.D. England, D. Forshew, W. Johnston, et al.
Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the quality standards subcommittee of the American academy of neurology.
Neurology, 73 (2009), pp. 1218-1226
P.M. Andersen, S. Abrahams, G.D. Borasio, M. de Carvalho, A. Chio, P. Van Damme, et al.
EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) — revised report of an EFNS task force.
Eur J Neurol, 19 (2012), pp. 360-375
E. Farrero, A. Antón, C.J. Egea, M.J. Almaraz, J.F. Masa, I. Utrabo, et al.
Normativa sobre el manejo de las complicaciones respiratorias de los pacientes con enfermedad neuromuscular.
Arch Bronconeumol, 49 (2013), pp. 306-313
A.J. Bokolo.
Exploring the adoption of telemedicine and virtual software for care of outpatients during and after COVID-19 pandemic.
Ir J Med Sci, 190 (2021), pp. 1-10
N. Ambrosino, M. Vitacca, M. Dreher, V. Isetta, J.M. Montserrat, T. Tonia, et al.
Tele-monitoring of ventilator-dependent patients: a European Respiratory Society Statement.
Eur Respir J, 48 (2016), pp. 648-663
Guía SEPAR para la teleconsulta de pacientes respiratorios. https://www.separ.es/node/1974.
W. Jiang, L. Wang, Y.L. Song.
Titration and follow-up for home noninvasive positive pressure ventilation in chronic obstructive pulmonary disease: the potential role of tele-monitoring and the Internet of things.
Clin Respir J, 15 (2021), pp. 705-715
N. Ambrosino, C. Fracchia.
The role of tele-medicine in patients with respiratory diseases.
Expert Rev Respir Med, 11 (2017), pp. 893-900
D. Chaet, R. Clearfield, J.E. Sabin, K. Skimming.
Ethical practice in Telehealth and Telemedicine.
J Gen Intern Med, 32 (2017), pp. 1136-1140
Copyright © 2022. Sociedad Española de Neurología
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