Klin Padiatr 2016; 228(01): 42-46
DOI: 10.1055/s-0035-1565240
Original Article
© Georg Thieme Verlag KG Stuttgart · New York

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

Langzeit-Atemunterstützung bei Kindern und Jugendlichen in Österreich: eine nationale Bestandsaufnahme
S. Weiss
1   Department of Pediatrics, Kaiser Franz Josef Hospital, Vienna, Austria
,
A. Van Egmond-Fröhlich
1   Department of Pediatrics, Kaiser Franz Josef Hospital, Vienna, Austria
,
N. Hofer
2   Department of Pediatrics, Medical University of Graz, Graz, Austria
,
A. Pfleger
2   Department of Pediatrics, Medical University of Graz, Graz, Austria
,
R. Rath
3   Department of Pediatrics, Hospital Moedling, Moedling, Austria
,
R. Schwarz
4   Department of Pediatrics, Womenʼs and Childrenʼs Hospital Linz, Linz, Austria
,
H. Kurz
5   Department of Pediatrics, SMZ Ost Danube Hospital, Vienna, Austria
,
V. Waibel
6   Department of Pediatrics, Medical University of Innsbruck, Innsbruck, Austria
,
H. Kenzian
7   Department of Pediatrics, Hospital Villach, Villach, Austria
,
E. Kommer
8   Department of Pediatrics, Hospital Mistelbach, Mistelbach, Austria
,
F. Wadlegger
9   Department of Pediatrics, Clinical Center Klagenfurt, Klagenfurt, Austria
,
W. Stelzl
10   Department of Pediatrics, Hospital Feldkirch, Feldkirch, Austria
,
B. Keck
11   St. Anna Childrenʼs Hospital, Vienna, Austria
,
I. Grigorow
12   Department of Pediatrics, Hospital Leoben, Leoben, Austria
,
R. Kerbl
14   Department of Pediatrics, Wilhelminenspital, Vienna, Austria
,
W. Sauseng
13   Medical Services, Youth and Child Welfare Services, City of Graz, Austria
,
T. Frischer
14   Department of Pediatrics, Wilhelminenspital, Vienna, Austria
,
E. Eber
2   Department of Pediatrics, Medical University of Graz, Graz, Austria
,
G. Bernert
1   Department of Pediatrics, Kaiser Franz Josef Hospital, Vienna, Austria
› Author Affiliations
Further Information

Publication History

Publication Date:
23 December 2015 (online)

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.

 
  • References

  • 1 Alonso-Alvarez ML, Cordero-Guevara JA, Teran-Santos J et al. Obstructive sleep apnea in obese community-dwelling children: the NANOS Study. Sleep 2014; 37: 943-949
  • 2 Amin R, Sayal P, Syed F et al. Pediatric long-term home mechanical ventilation: twenty years of follow-up from one Canadian center. Pediatr Pulmonol 2014; 49: 816-824
  • 3 Bixler EO, Vgontzas AN, Lin HM et al. Sleep disordered breathing in children in a general population sample: prevalence and risk factors. Sleep 2009; 32: 731-736
  • 4 Dohna-Schwake C, Podlewski P, Voit T, Mellies U. Non-invasive ventilation reduces respiratory tract infection in children with neuromuscular disease. Pediatr Pulmonol 2008; 43: 67-71
  • 5 Fauroux B, Boffa C, Desguerre I et al. for the Pediatric Group of the Association nataionale pour le Traitement à Domicile de l`Insuffisance Respiratoire. Long-Term Noninvasive Mechanical Ventilation for Children at Home: A National Survey. Pediatr Pulmonol 2003; 35: 119-125
  • 6 Goodwin S, Smith H, Langton Hewer S et al. Increasing prevalence of domicilary ventilation: changes in service demand and provision in the South West of the UK. Eur J Pediatr 2011; 170: 1187-1192
  • 7 Graham RJ, Fleegler EW, Robinson WM. Chronic ventilator need in the community: a 2005 pediatric census of Massachusetts. Pediatrics. 2007 119. e1280-e1287
  • 8 Hartl SE, Heindl W, Lahrmann H et al. Provisions for long-term at home ventilated patient: consensus recommendations of the Austrian Society for Lung Diseases and Tuberculosis. Wien Klin Wochenschr 2004; 116 (Suppl. 03) 1-20
  • 9 Ishikawa Y, Miura T, Ishikawa Y et al. Duchenne muscular dystrophy: survival by cardio-respiratory interventions. Neuromuscular Dis 2011; 21: 47-51
  • 10 Katz ES, D’Ambrosio CM. Pediatric obstructive sleep apnea syndrome. Clin Chest Med 2010; 31: 221-234
  • 11 Katz S, Selvadurai H, Keilty K et al. Outcome of non-invasive positive pressure ventilation in paediatric neuromuscular disease. Arch Dis Child 2004; 89: 121-124
  • 12 Marcus CL, Radcliffe J, Konstantinopoulou S et al. Effects of positve airway pressure therapy on neurobehavioral outcomes in children with obstructive sleep apnea. Am J Respir Crit Care Med 2012; 185: 998-1003
  • 13 McDougall CM, Adderley RJ, Wensley DF, Seear MD. Long-term ventilation in children: longitudinal trends and outcomes. Arch Dis Child 2013; 98: 660-665
  • 14 Paulides FM, Plötz FB, Verweij-van den Oudenrijn LP et al. Thirty years of home mechanical ventilation in children: escalating need for pediatric intensive care beds. Intensive Care Med 2012; 38: 847-852
  • 15 Racca F, Berta G, Sequi M et al. on behalf of the “LTV Pediatric Italian Network”. Long-Term Home Ventilation of Children in Italy: a national survey. Pediatr Pulmonol 2011; 46: 566-572
  • 16 Racca F, Bonati M, DelSorbo L et al. Invasive and non-invasive long-term mechanical ventilation in Italian children. Minerva Anestesiol 2011; 77: 892-901
  • 17 Randerath W, Lorenz J, Windisch W et al. Care of Patients under Mechanical Ventilation at Home and in Nursing Home Conditions. Position Paper of the German Medical Associations of Pneumology and Ventilatory Support. Pneumologie 2008; 62: 305-308
  • 18 Schenk P, Eber E, Funk GC et al. Nichtinvasive und invasive außerklinische Beatmung beim chronisch respiratorischen Versagen. Konsensus-Report des Arbeitskreises für Beatmung & Intensivmedizin der Österreichischen Gesellschaft für Pneumologie. Wien Klin Wochenschr 2015 in press
  • 19 Simonds AK, Ward S, Heather S et al. Outcome of paediatric domicilary mask ventilation in neuromuscular and skeletal disease. Eur Respir J 2000; 16: 476-481
  • 20 Statistik Austria. Jahrbuch der Gesundheitsstatistik 2013. Wien Kommissionsverlag; 2014: 54 p
  • 21 Wallis C, Paton JY, Beaton S, Jardine E. Children on long-term ventilatory support: 10 years of progress. Arch Dis Child 2011; 95: 998-1002
  • 22 Ward S, Chatwin M, Heather S, Simonds AK. Randomised controlled trial of non-invasive ventilation for nocturnal hypoventilation in neuromuscular and chest wall disease patients with daytime normocapnia. Thorax 2005; 60: 1019-1024
  • 23 Weese-Mayer DE, Berry-Kravis EM, Ceccherini I et al. An official ATS Clinical Policy Statement: Congenital Central Hypoventilation Syndrome. Genetic Basis, Diagnosis and Management. Am J Respir Crit Care Med 2010; 181: 626-644
  • 24 Weinstock TG, Rosen CL, Marcus CL et al. Predictors of obstructive sleep apnea severity in adenotonsillectomy canditates. Sleep 2014; 37: 261-269
  • 25 Windisch W, Brambring J, Budweiser S et al. Non-Invasive and Invasive Mechanical Ventilation for Treatment of Chronic Respiratory Failure. S2-Guidelines Published by the German Medical Association of Pneumology and Ventilatory Support. Pneumologie 2010; 64: 207-240
  • 26 Young HK, Lowe A, Fitzgerald DA et al. Outcome of noninvasive ventilation in children with neuromuscular disease. Neurology 2007; 68: 198-201