Home telemonitoring of non-invasive ventilation decreases healthcare utilisation in a prospective controlled trial of patients with amyotrophic lateral sclerosis

Pinto, Anabela; Almeida, José Pedro; Pinto, Susana; Pereira, João Carlos das Neves; Oliveira, António G.; Carvalho, Mamede de

doi:10.1136/jnnp.2010.206680

Cited by 137 publications

(103 citation statements)

References 35 publications

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“…Lechtzin et al reported a retrospective study on 102 ALS patients and found a survival advantage of 1 year in those provided intervention early (forced vital capacity [FVC] > 65%) [21]. Pinto et al presented similar data in patients who were started on NIPPV because of nocturnal desaturations but not diminished FVC [22]. Patients in this study receiving early intervention also survived longer than those provided the intervention later.…”

Section: Introductionsupporting

confidence: 67%

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Guest Editorial: Early and innovative symptomatic care to improve quality of life of ALS patients at Cleveland VA ALS Center

McClellan¹,

Washington²,

Ruff³

et al. 2013

JRRD

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INTRODUCTIONAmyotrophic lateral sclerosis (ALS) is a neurodegenerative disease of unknown etiology. However, there is good evidence to validate the theory that military service predisposes the individual to the future development of the disease [1]. As a direct result of these data, in 2008 ALS became a presumptively compensable illness for all veterans with 90 days or more of continuously active service in the military. This decision led to an influx of ALS patients into the Department of Veterans Affairs (VA) healthcare system and the development of a nationwide plan of care [2]. The implementation of this plan at the Cleveland VA Spinal Cord Injury (SCI) Division has been challenging. However, it has offered the opportunity to review current practice parameters that dictate the care of ALS patients in a new context. Using these parameters and considering the strengths and weakness of the VA healthcare system, we have made significant improvements to current practice and applied novel technology to care for ALS patients. Herein we describe these innovations and the foundation we have established to provide high quality ALS care. BACKGROUNDALS is a terminal neurodegenerative disorder. The management of patients with ALS centers almost entirely around symptomatic care. Although many studies have examined the role of particular interventions in prolonging survival after diagnosis or decreasing the rate of decline in physical ability, perhaps the most important studies guiding intervention have investigated quality of life (QoL) over the course of the disease. In 1999, the American Academy of Neurology (AAN) published the first set of formal practice parameters based on a review of the literature [3]. These evidencebased practice parameters were revised in 2009 [4] and included important updates on how care is administered, as well as recommendations regarding the use of the first disease-modifying agent available. The European Federation of Neurological Societies (EFNS) published parallel recommendations in 2005 [5], with revised and updated practice guidelines published in 2012 [6]. A third publication in 2007 also summarized current evidence-based recommendations for care of ALS patients [7]. These three sets of recommendations are nearly identical and in many instances lack precise details in terms of when and how to implement care. This reveals a need for further studies to answer basic questions regarding interventions, such as when a percutaneous endoscopic gastrostomy (PEG) tube should be placed in a patient or how early respiratory support should be provided. This information would help standardize practice parameters and allow for a higher level of symptomatic care in patients with ALS.

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Section: Introductionsupporting

confidence: 67%

“…Pinto et al reported that in ventilated ALS patients, home telemonitoring resulted in decreased emergency room visits and hospital admissions, with a trend toward increased survival [22]. We are currently following eight patients via telemedicine and four patients using mobile video consultation.…”

Section: Telemedicine and Mobile Video Consultationmentioning

confidence: 99%

Guest Editorial: Early and innovative symptomatic care to improve quality of life of ALS patients at Cleveland VA ALS Center

McClellan¹,

Washington²,

Ruff³

et al. 2013

JRRD

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“…A prospective, single-blind controlled trial [9] of home noninvasive ventilation (NIV) in amyotrophic lateral sclerosis (ALS), showed that compliance to NIV with or without tele-monitoring was similar, whereas NIV initial setting was successfully managed by tele-monitoring. This study showed also that tele-monitoring might offer potential favourable effects on costs, survival and functional status.…”

Section: Neuromuscular Diseasesmentioning

confidence: 99%

Tele-monitoring of ventilator-dependent patients: a European Respiratory Society Statement

Ambrosino¹,

et al. 2016

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The estimated prevalence of ventilator-dependent individuals in Europe is 6.6 per 100 000 people. The increasing number and costs of these complex patients make present health organisations largely insufficient to face their needs. As a consequence, their burden lays mostly over families. The need to reduce healthcare costs and to increase safety has prompted the development of tele-monitoring for home ventilatory assistance.

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“…It was considered an effective ventilation whether patient presented fingertip pulse oximetry>96%, and heart rate between 60-80 bpm under NIV during the medical consultation, with further analyses of satisfactory parameters of nocturnal percutaneous pulse oximetry as aforementioned. [18,19]; and we recorded data of compliance and each ventilation settings changes throughout NIV use [20]. All samples were fully compliant to NIV.…”

Section: Functional Assessmentmentioning

confidence: 99%

Can Non-invasive Ventilation Settings Predicts Functional and Survival Outcome in ALS Patients?

Acm¹,

Pinto²,

Pinto³

2017

J Community Med Health Educ

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Home telemonitoring of non-invasive ventilation decreases healthcare utilisation in a prospective controlled trial of patients with amyotrophic lateral sclerosis

Abstract: This study shows that telemonitoring reduces health care utilisation with probable favourable implications on costs, survival and functional status.

Cited by 137 publications

References 35 publications

Guest Editorial: Early and innovative symptomatic care to improve quality of life of ALS patients at Cleveland VA ALS Center

Guest Editorial: Early and innovative symptomatic care to improve quality of life of ALS patients at Cleveland VA ALS Center

Tele-monitoring of ventilator-dependent patients: a European Respiratory Society Statement

Can Non-invasive Ventilation Settings Predicts Functional and Survival Outcome in ALS Patients?

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