The Evolution of Home Mechanical Ventilation in Poland Between 2000 and 2010

Nasiłowski, Jacek; Wachulski, Mariusz; Trznadel, Wojciech; Andrzejewski, Witalij; Migdał, Marek; Drozd, Wojciech; Pytel, Andrzej; Suchanke, Robert; Czajkowska-Malinowska, Małgorzata; Majszyk, Tomasz; Szkulmowski, Zbigniew; Chazan, Ryszarda

doi:10.4187/respcare.03126

Cited by 37 publications

(39 citation statements)

References 32 publications

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“…The percentage distribution of the various diseases and disorders in our sample was only partially consistent with other reports [1][2][3][4][5][6][7][8][10][11][12][13][31][32][33][34][35][36]: while the percentages relating to NMDs and CCHS were similar, there was a much lower rate of lung and airway diseases (bronchial dysplasia, malaria, ciliary dyskinesia, OSAS, and other respiratory diseases with chronic hypoventilation) in our sample, with 3.6% as opposed to 25-35% in the literature [1][2][3][4][5][6]8,9,[11][12][13][31][32][33][34][35][36]. This may relate to patient care and clinical or organizational factors particular to our setting: patients are only referred to the regional reference center if they are under 18 years old and have complex, lifethreatening diseases posing very complicated care issues.…”

Section: Discussionsupporting

confidence: 78%

“…Unlike the series described in other studies [29,30], there were no older cases because patients are transferred to the adult services when they reach the age of 18, in accordance with current Italian legislation. The mean age of our sample was much lower than in other studies concerning pediatric populations on LTMV-H [1][2][3][4][5][6][7][8][10][11][12][31][32][33][34][35]: the Canadian studies [3] describe a sample with a mean age of 9.5 years, and the other Italian reports concern samples with a mean age of 8 years [6]. As for gender, the distribution in our cohort revealed no major differences among patients requiring LTMV-H, with only a slight prevalence of male gender (55%), as reported elsewhere [13].…”

Section: Discussionmentioning

confidence: 43%

“…The aim of this study was to identify the demographic and clinical features of the pediatric patients on LTMV-H in our region [1][2][3][4][5][6][7][8][10][11][12][13][31][32][33][34][35] with a view to making the best possible arrangements for their care.…”

Section: Objectivementioning

confidence: 99%

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Long-Term Ventilation at Home and Pediatric Palliative Care: Patients’ Characterization in an Italian Regional Survey

Rusalen¹,

Agosto²,

Brugnaro³

et al. 2015

J Palliat Care Med

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Background: The prevalence of children receiving long-term mechanical ventilation at home (LTMV-H) is rising in many countries as advances in technology and medicine extend the survival of such patients. In Italy, the prevalence is 4.2 per 100,000 pediatric patients. It becomes essential to thoroughly assess these patients' needs, and of the quality and adequacy of their home care. Pediatric palliative care (PPC) may be an appropriate strategy for the global care and quality of life of children needing LTMV-H and their families.

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Section: Discussionsupporting

confidence: 78%

Section: Discussionmentioning

confidence: 43%

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Long-Term Ventilation at Home and Pediatric Palliative Care: Patients’ Characterization in an Italian Regional Survey

Rusalen¹,

Agosto²,

Brugnaro³

et al. 2015

J Palliat Care Med

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“…During the past 20 years, HMV has been implemented in an increasing number of countries, but the care arrangements which support HMV, vary greatly between and within countries (Ando et al, ; Hannan et al, ; Lloyd‐Owen et al, ; Nasiłowski et al, ; Stuart & Weinrich, ). Individuals using HMV require an organized care structure to facilitate a good quality of life (Stuart & Weinrich, ).…”

Section: Introductionmentioning

confidence: 99%

A qualitative study of experiences of health and social care in home mechanical ventilation

et al. 2018

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Aim To contribute insight into health and social care integration through an exploration of the care experiences of adults with degenerative neuromuscular conditions who use a mechanical ventilator at home. Design Descriptive qualitative research. Methods Seventeen semi‐structured interviews were conducted with patients and family carers living in Scotland during 2015–2016 and thematically analysed. Results To achieve a satisfying life, home ventilated participants required help from a variety of health and social care services, as well as care from family. Examples of successful care were identified, but there were also serious failures and conflict with services. Identifying how care fails or succeeds for this patient population and their families requires an understanding of the interdependency of health and social care. This was achieved by examining health and social care provision from the experiential perspective of care‐users to provide insights into how disconnected provision has an impact on users’ lives in numerous, idiosyncratic ways.

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“…57 In many countries, there is high economic pressure to discharge children with BPD as early as possible, and some studies indicate a rise in the number of children with BPD receiving HMV. 5,19,50,58 However there is significant international and institutional variability, largely due to lack of rigorous studies to determine the optimal timing for consideration of tracheostomy and HMV in this group. 9 There is no recognized standard timing for tracheostomy placement in children undergoing prolonged mechanical ventilation.…”

Section: Bronchopulmonary Dysplasiamentioning

confidence: 99%