Long-Term Respiratory Support for Children and Adolescents in Austria: A National Survey

Abstract

Background: Population-based data on pediatric patients on long-term respiratory support (LTRS) in Austria are lacking. This study aimed to record the pediatric departments active in this field, as well as number and characteristics of patients on LTRS.

Methods: A national cross-sectional study was carried out by means of questionnaires sent to all pediatric departments in Austria.

Results: All departments answered to the questionnaires. On June 1st, 2013, the reference day for this study, 12 of the 41 pediatric departments in Austria were active in the field. At this time, these centers were caring for 143 patients, 111 (77.6%) of them under 18 years, which corresponds to a prevalence of 7.4 per 100 000. The patients suffered from neuromuscular disorders (44%), other neurological disorders (18.9%), disorders of respiratory drive (9.1%), obstructive sleep apnea (8.4%), thoracal and spinal diseases (8.4%), pulmonary disorders (4.9%) and other diseases (6.3%). Continuous positive airway pressure was used in 6.3%, non-invasive ventilation in 60.1% and invasive ventilation in 33.6% of the patients, respectively. LTRS was performed at home in 92.3%.

Conclusion: LTRS represents a common management strategy in children and adolescents with a variety of disorders. Census reports such as this one provide the basis for appropriate planning of resource allocation. The age distribution of our patients shows the need for structured transition into adult care.

Zusammenfassung

Hintergrund: Bislang gab es keine nationalen Daten zu pädiatrischen Patientinnen und Patienten mit Langzeit-Atemunterstützung (long-term respiratory support, LTRS) in Österreich. Ziel dieser Erhebung war, die in diesem Bereich aktiven pädiatrischen Abteilungen sowie die Anzahl und Charakteristika der von ihnen betreuten Patientinnen und Patienten zu erfassen.

Methoden: Es wurde eine anonyme nationale Querschnittsstudie mittels Fragebogenerhebung an sämtlichen pädiatrischen Abteilungen Österreichs durchgeführt.

Ergebnisse: Alle Abteilungen antworteten auf die Fragebögen. Zum Stichtag 1.6.2013 waren 12 der 41 pädiatrischen Abteilungen Österreichs im Bereich der LTRS aktiv. An diesen 12 Abteilungen wurden 143 Patienten betreut, von denen 111 (77,6%) <18 Jahre alt waren. Demnach lag die Prävalenz der LTRS bei Patienten <18 Jahren bei 7,4:100 000. 44% hatten eine neuromuskuläre Erkrankung, 18,9% eine andere neurologische Erkrankung, 9% eine Atemantriebsstörung, 8,4% ein obstruktives Schlafapnoe-Syndrom, 8,4% Thorax- und Wirbelsäulenerkrankungen, 4,9% pulmologische Erkrankungen und 6,3% andere Erkrankungen. 6,3% hatten eine Therapie mit „continuous positive airway pressure“, 60,1% eine nicht-invasive Beatmung und 33,6% eine invasive Beatmung. 92,3% der Patienten wurden zu Hause betreut.

Schlussfolgerung: LTRS findet Anwendung bei unterschiedlichen Erkrankungen. Sie führt zu einem zunehmenden Überleben im Kindes- und Jugendalter, weshalb die Planung der Versorgungsstrukturen nicht nur die Pädiatrie, sondern nach Transition auch die Erwachsenen-Medizin betrifft.

Key words

Austria - child - chronic respiratory insufficiency - epidemiology - long-term respiratory support

Schlüsselwörter

Österreich - Kind - chronische respiratorische Insuffizienz - Epidemiologie - Langzeit Atemunterstützung

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