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Internet facilitated management improves home ventilation in amyotrophic lateral sclerosis
  1. Michael Swash
  1. Correspondence to Professor M Swash, Department of Neurology, The Royal London Hospital, London E1 1BB, UK; mswash{at}btinternet.com

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Intermittent positive pressure ventilation has become increasingly used in patients with type 2 respiratory failure, largely because of non-invasive ventilation (NIV), a practical, effective and safe procedure through technical advances for its use in the home setting.1 2 Successful NIV requires careful monitoring, implying a need for home visits by skilled staff, regular hospital visits and the availability of an emergency backup service at all times. Emergencies mostly relate to blockage of respiratory passages by mucus or infections rather than technical failures. The most difficult phase of NIV is the period of initial adaptation to the ventilator which requires frequent adjustments to the pressure–volume variables. In general, early adoption of NIV is associated with better adaptation, as defined by toleration of NIV for 4 h at night.2 Most patients with motor neuron disease use their ventilator system predominantly at night to avoid nocturnal desaturation, one of the principal indications for the use of NIV.2

Pinto and colleagues3 from Lisbon, the major Portuguese amyotrophic lateral sclerosis (ALS) centre, describe their experience with a significant advance in the management of home NIV (see page 1238). Using a commercially available modem to monitor ventilatory parameters, such as inspiratory pressure and volume, respiratory rate and finger oximetry, they have been able to modify ventilator settings wirelessly from the hospital laboratory, without the need to visit the patient. Preset limits to the NIV protocol were set on an individual basis for each patient, and the modem connexion signalled variations from these predetermined limits to the laboratory base. Appropriate changes in ventilator settings were then transmitted wirelessly back to the patient's ventilator. The interactive capacity of this wireless modem system is a key feature. This methodology has reduced both the number of unscheduled hospital visits and also, importantly, the number of emergency admissions, with demonstrable gains in quality of life. The important 3 month adaptation phase to NIV was also facilitated by the ability to modify ventilator settings on an as required basis in relation to information received from the ventilator's modem. There were no effects on survival. More work needs to be done to delineate stress experienced by patients and carers alike with home NIV, especially the effects on carers.4 Perhaps this new technology will lessen the latter.

This application of modern information technology surely opens a new era of automatic and interactive monitoring of relevant parameters concerning a patient's response to treatment in a number of different areas of medicine—and how wonderful it would be for everyone (patients, family, nurse and doctor alike), and not least healthcare funding, if many of the repeated follow-up outpatient visits currently organised could at last be assigned to the pages of history. Other centres across the world will wish to apply this technology to their own ventilator management practice.

An American estimate, in 1993, of the costs of home ventilation in ALS suggested an annual cost of $153 252.1 Pinto et al have not yet completed their analysis of the cost benefits of this internet based system of management of home NIV but the benefits to patients are clearly evident from their initial report, and we shall await these data with keen anticipation.

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Footnotes

  • Linked articles 206680

  • Competing interests None.

  • Provenance and peer review Commissioned; not externally peer reviewed.

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