Home mechanical ventilation registration in Greece. Preliminary results from the Hellenic HMV Network

Serasli, Evangelia; Lekka, Irini; Kilintzis, Vassilis; Moysiadis, Theodoros; Agrafiotis, Michalis; Fekete, Katerina; Lagonidis, D.; Pataka, Athanasia; Porpodis, Κonstantinos; Paschidou, Vasiliki; Steiropoulos, Paschalis; Trakada, Georgia; Chasapidou, Georgia; Ioannidou, Despoina; Koulouras, Vassilis; Matamis, D.; Matei, Christina; Σδούγκα, Μαρία; Volakli, Eleni; Maglaveras, Nikos; Tsara, Venetia

doi:10.1183/1393003.congress-2017.pa1888

Cited by 2 publications

(6 citation statements)

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“…Table 1 reports a prevalence of NMDs using HMV at 2.9/100 000 inhabitants, which is in line with France in 2013 (3/100 000), 8 and Belgium Figure 1 Most recently estimated national prevalence of HMV in 24 countries. Prevalence by date of published reference: Austria, 5 Denmark, 5 Ireland, 5 Italy, 5 Portugal, 5 Spain, 5 France, 6 Germany, 6 UK, 6 Poland, 11 USA, 12 Australia, 13 New Zealand, 13 Canada, 14 South Korea, 15 Chile, 16 Greece, 17 Hungary, 18 Belgium, 19 Czech Republic, 9 Norway, 20 Sweden, 20 Finland, 20 Netherlands. 21 HMV, home mechanical ventilation.…”

Section: Prevalence Of Hmv In Nmdsmentioning

confidence: 99%

“…Figure 1 depicts the most recently reported prevalence from 24 national HMV programmes between 2005 and 2020 5 6 9 11–21. Available prevalence, ranging 1.2–47/100 000 inhabitants, was highly variable across countries.…”

Section: Prevalencementioning

confidence: 99%

“…Figure 4 illustrates the evolution over time of HMV in 15 areas, where estimates of prevalence of HMV were available at different periods 5 6 13 16 17 19–22 42–49. The number of HMV users were constantly rising, with rapid progression in some countries, and slow progression in others.…”

Section: Prevalencementioning

confidence: 99%

“…Evolution of the prevalence of HMV in 15 areas. Data by decreasing prevalence of HMV (reference): Norway,5 20 42 Finland,5 20 43 Vaud (Switzerland),44 44 Sweden,13 20 22 France,5 6 Netherlands,5 21 Catalonia (Spain),6 6 45 UK,5 6 Germany,5 6 Belgium,5 19 USA,45 46 Chile,16 47 Ontario (Canada),48 Poland23 23 and Greece 5 17. HMV, home mechanical ventilation.…”

Section: Prevalencementioning

confidence: 99%

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Building a home ventilation programme: population, equipment, delivery and cost

Toussaint

Wijkstra

McKim

et al. 2022

Thorax

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Home mechanical ventilation (HMV) improves quality of life and survival in patients with neuromuscular disorders (NMD). Developing countries may benefit from published evidence regarding the prevalence, cost of equipment, technical issues and organisation of HMV in NMD, facilitating the development of local turn-key HMV programmes. Unfortunately, such evidence is scattered in the existing literature. We searched Medline for publications in English and French from 2005 to 2020. This narrative review analyses 24 international programmes of HMV. The estimated prevalence (min–max) of HMV is ±7.3/100 000 population (1.2–47), all disorders combined. The prevalence of HMV is associated with the gross domestic product per capita in these 24 countries. The prevalence of NMD is about 30/100 000 population, of which ±10% would use HMV. Nocturnal (8/24 hour), discontinuous (8–16/24 hours) and continuous (>16/24 hours) ventilation is likely to concern about 60%, 20% and 20% of NMD patients using HMV. A minimal budget of about 168€/patient/year (504€/100 000 population), including the cost of equipment solely, should address the cost of HMV equipment in low-income countries. When services and maintenance are included, the budget can drastically increase up to between 3232 and 5760€/patient/year. Emerging programmes of HMV in developing countries reveal the positive impact of international cooperation. Today, at least 12 new middle, and low-income countries are developing HMV programmes. This review with updated data on prevalence, technical issues, cost of equipment and services for HMV should trigger objective dialogues between the stakeholders (patient associations, healthcare professionals and politicians); potentially leading to the production of workable strategies for the development of HMV in patients with NMD living in developing countries.

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Section: Prevalence Of Hmv In Nmdsmentioning

confidence: 99%

Section: Prevalencementioning

confidence: 99%

Section: Prevalencementioning

confidence: 99%

Section: Prevalencementioning

confidence: 99%

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Building a home ventilation programme: population, equipment, delivery and cost

Toussaint

Wijkstra

McKim

et al. 2022

Thorax

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“…All data are stored in a central database, available to the contributing multiple health centers and institutions across the country, mainly for research purposes 4 . The HR-HMV IT platform hosted by the Institute of Applied Biosciences at the Centre for Research and Technology Hellas (INAB|CERTH) is the advanced version of an older IT system [7]. The new system, operational since 2019, was adapted closer to the requirements of clinicians and everyday practice, capable of storing information for more clinical procedures and storing a larger amount of patient data, while being more secure and user-friendly at the same time.…”

Section: Objective and Designmentioning

confidence: 99%

Hellenic registry of patients with home mechanical ventilation (HR-HMV): profiling sleep Apnea–Hypopnea syndrome patients across Greece

Dimitriadis

Alexopoulou

Amfilochiou

et al. 2022

BMC Med Inform Decis Mak

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Background Chronic respiratory conditions are a prominent public health issue and thus, building a patient registry might facilitate both policy decision making and improvement of clinical management processes. Hellenic Registry of patients with Home Mechanical Ventilation (HR-HMV) was initiated in 2017 and a web-based platform is used to support patient data collection. Eighteen hospital departments (including sleep labs) across Greece participate in this initiative, focusing on recording data for both children and adult patients supported by mechanical ventilation at home, including patients with Sleep Apnea–Hypopnea Syndrome (SAHS) under Positive Airway Pressure (PAP) therapy. Methods The HR-HMV initiative ultimately aims to provide a database for evidence-based care and policy making in this specific domain. To this end, a web information system was developed and data were manually collected by clinics and hospital departments. Legal and privacy issues (such as General Data Protection Rule compliance and technical information security measures) have been considered while designing the web application. Based on the collected data, an exploratory statistical report of SAHS patients in Greece is presented. Results Eleven out of the eighteen participating clinics and hospital departments have contributed with data by the time of the current study. More than 5000 adult and children patient records have been collected so far, the vast majority of which (i.e., 4900 patients) diagnosed with SAHS. Conclusion The development and maintenance of patient registries is a valuable tool for policy decision making, observational/epidemiological research and beyond (e.g., health technology assessment procedures). However, as all data collection and processing approaches, registries are also related with potential biases. Along these lines, strengths and limitations must be considered when interpreting the collected data, and continuous validation of the collected clinical data per se should be emphasized. Especially for Greece, where the lack of national registries is eminent, we argue that HR-HMV could be a useful tool for the development and the update of related policies regarding the healthcare services for patients with home mechanical ventilation support and SAHS patients, which could be useful for related initiatives at a European level as well.

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Home mechanical ventilation registration in Greece. Preliminary results from the Hellenic HMV Network

Cited by 2 publications

References 0 publications

Building a home ventilation programme: population, equipment, delivery and cost

Building a home ventilation programme: population, equipment, delivery and cost

Hellenic registry of patients with home mechanical ventilation (HR-HMV): profiling sleep Apnea–Hypopnea syndrome patients across Greece

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