18 jaar ervaring met chronische beademing bij patiënten met spierdystrofie van Duchenne

A F Meinesz; G Bladder; J F Goorhuis; J M Fock; A L Staal-Schreinemachers; Jan Zijlstra; P J Wijkstra

18 jaar ervaring met chronische beademing bij patiënten met spierdystrofie van Duchenne

Translated title of the contribution: 18 years experience with mechanical ventilation in patients with Duchenne muscular dystrophy

A F Meinesz, G Bladder, J F Goorhuis, J M Fock, A L Staal-Schreinemachers, Jan Zijlstra, P J Wijkstra

Groningen Research Institute for Asthma and COPD (GRIAC)

Research output: Contribution to journal › Article › Academic › peer-review

10 Citations (Scopus)

Abstract

OBJECTIVE: To find out which patients with Duchenne muscular dystrophy are eligible for starting home mechanical ventilation and what the survival rate is.

DESIGN: Retrospective.

METHOD: In 48 patients with Duchenne muscular dystrophy who were treated with home ventilation from 1987, the results were assessed in the follow-up visit in February 2005. Initially, ventilation was only given through a tracheotomy (TPPV), but after starting up a multidisciplinary neuromuscular consultation, non-invasive ventilation (NIPPV) was offered in an earlier stage of the disease. The following data were derived from the outpatient medical record: indication for ventilation, vital capacity (VC), arterial blood gas values, duration of ventilation up to February 2005, survival and causes of death.

RESULTS: 15 patients died. The 5-year survival rate was 75% from the start of mechanical ventilation and 67% (18/27) of the patients were still living at home at the time of the follow-up visit. The most important causes of death were cardiomyopathy (5/15) and tracheal bleeding (3/15). The group of patients who started ventilation before 1995 (n = 17) had a significantly smaller VC than the group (n = 31) who started after the neuromuscular consultation was set up. The PaCO2 during daytime was significantly higher in the group that started ventilation before 1995 compared to the group that started later.

CONCLUSION: Home mechanical ventilation can be implemented effectively in patients with Duchenne dystrophy, with a 5-year survival of 75%.

Translated title of the contribution	18 years experience with mechanical ventilation in patients with Duchenne muscular dystrophy
Original language	Dutch
Pages (from-to)	1830-1833
Number of pages	4
Journal	Nederlands Tijdschrift voor Geneeskunde
Volume	151
Issue number	33
Publication status	Published - 18-Aug-2007

Keywords

Adolescent
Adult
Cause of Death
Child
Female
Home Care Services
Humans
Intermittent Positive-Pressure Ventilation
Male
Muscular Dystrophy, Duchenne
Neuromuscular Diseases
Respiration, Artificial
Respiratory Insufficiency
Retrospective Studies
Survival Analysis
Vital Capacity

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@article{456af13ed61f4a7aa368fc29e68b34c8,

title = "18 jaar ervaring met chronische beademing bij pati{\"e}nten met spierdystrofie van Duchenne",

abstract = "OBJECTIVE: To find out which patients with Duchenne muscular dystrophy are eligible for starting home mechanical ventilation and what the survival rate is.DESIGN: Retrospective.METHOD: In 48 patients with Duchenne muscular dystrophy who were treated with home ventilation from 1987, the results were assessed in the follow-up visit in February 2005. Initially, ventilation was only given through a tracheotomy (TPPV), but after starting up a multidisciplinary neuromuscular consultation, non-invasive ventilation (NIPPV) was offered in an earlier stage of the disease. The following data were derived from the outpatient medical record: indication for ventilation, vital capacity (VC), arterial blood gas values, duration of ventilation up to February 2005, survival and causes of death.RESULTS: 15 patients died. The 5-year survival rate was 75% from the start of mechanical ventilation and 67% (18/27) of the patients were still living at home at the time of the follow-up visit. The most important causes of death were cardiomyopathy (5/15) and tracheal bleeding (3/15). The group of patients who started ventilation before 1995 (n = 17) had a significantly smaller VC than the group (n = 31) who started after the neuromuscular consultation was set up. The PaCO2 during daytime was significantly higher in the group that started ventilation before 1995 compared to the group that started later.CONCLUSION: Home mechanical ventilation can be implemented effectively in patients with Duchenne dystrophy, with a 5-year survival of 75%.",

keywords = "Adolescent, Adult, Cause of Death, Child, Female, Home Care Services, Humans, Intermittent Positive-Pressure Ventilation, Male, Muscular Dystrophy, Duchenne, Neuromuscular Diseases, Respiration, Artificial, Respiratory Insufficiency, Retrospective Studies, Survival Analysis, Vital Capacity",

author = "Meinesz, {A F} and G Bladder and Goorhuis, {J F} and Fock, {J M} and Staal-Schreinemachers, {A L} and Jan Zijlstra and Wijkstra, {P J}",

year = "2007",

month = aug,

day = "18",

language = "Dutch",

volume = "151",

pages = "1830--1833",

journal = "Nederlands Tijdschrift voor Geneeskunde",

issn = "0028-2162",

publisher = "NLM (Medline)",

number = "33",

}

TY - JOUR

T1 - 18 jaar ervaring met chronische beademing bij patiënten met spierdystrofie van Duchenne

AU - Meinesz, A F

AU - Bladder, G

AU - Goorhuis, J F

AU - Fock, J M

AU - Staal-Schreinemachers, A L

AU - Zijlstra, Jan

AU - Wijkstra, P J

PY - 2007/8/18

Y1 - 2007/8/18

N2 - OBJECTIVE: To find out which patients with Duchenne muscular dystrophy are eligible for starting home mechanical ventilation and what the survival rate is.DESIGN: Retrospective.METHOD: In 48 patients with Duchenne muscular dystrophy who were treated with home ventilation from 1987, the results were assessed in the follow-up visit in February 2005. Initially, ventilation was only given through a tracheotomy (TPPV), but after starting up a multidisciplinary neuromuscular consultation, non-invasive ventilation (NIPPV) was offered in an earlier stage of the disease. The following data were derived from the outpatient medical record: indication for ventilation, vital capacity (VC), arterial blood gas values, duration of ventilation up to February 2005, survival and causes of death.RESULTS: 15 patients died. The 5-year survival rate was 75% from the start of mechanical ventilation and 67% (18/27) of the patients were still living at home at the time of the follow-up visit. The most important causes of death were cardiomyopathy (5/15) and tracheal bleeding (3/15). The group of patients who started ventilation before 1995 (n = 17) had a significantly smaller VC than the group (n = 31) who started after the neuromuscular consultation was set up. The PaCO2 during daytime was significantly higher in the group that started ventilation before 1995 compared to the group that started later.CONCLUSION: Home mechanical ventilation can be implemented effectively in patients with Duchenne dystrophy, with a 5-year survival of 75%.

AB - OBJECTIVE: To find out which patients with Duchenne muscular dystrophy are eligible for starting home mechanical ventilation and what the survival rate is.DESIGN: Retrospective.METHOD: In 48 patients with Duchenne muscular dystrophy who were treated with home ventilation from 1987, the results were assessed in the follow-up visit in February 2005. Initially, ventilation was only given through a tracheotomy (TPPV), but after starting up a multidisciplinary neuromuscular consultation, non-invasive ventilation (NIPPV) was offered in an earlier stage of the disease. The following data were derived from the outpatient medical record: indication for ventilation, vital capacity (VC), arterial blood gas values, duration of ventilation up to February 2005, survival and causes of death.RESULTS: 15 patients died. The 5-year survival rate was 75% from the start of mechanical ventilation and 67% (18/27) of the patients were still living at home at the time of the follow-up visit. The most important causes of death were cardiomyopathy (5/15) and tracheal bleeding (3/15). The group of patients who started ventilation before 1995 (n = 17) had a significantly smaller VC than the group (n = 31) who started after the neuromuscular consultation was set up. The PaCO2 during daytime was significantly higher in the group that started ventilation before 1995 compared to the group that started later.CONCLUSION: Home mechanical ventilation can be implemented effectively in patients with Duchenne dystrophy, with a 5-year survival of 75%.

KW - Adolescent

KW - Adult

KW - Cause of Death

KW - Child

KW - Female

KW - Home Care Services

KW - Humans

KW - Intermittent Positive-Pressure Ventilation

KW - Male

KW - Muscular Dystrophy, Duchenne

KW - Neuromuscular Diseases

KW - Respiration, Artificial

KW - Respiratory Insufficiency

KW - Retrospective Studies

KW - Survival Analysis

KW - Vital Capacity

M3 - Article

C2 - 17874640

SN - 0028-2162

VL - 151

SP - 1830

EP - 1833

JO - Nederlands Tijdschrift voor Geneeskunde

JF - Nederlands Tijdschrift voor Geneeskunde

IS - 33

ER -

18 jaar ervaring met chronische beademing bij patiënten met spierdystrofie van Duchenne

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