title: Long-Term Follow-Up on Health-Related Quality of Life After Mechanical Circulatory Support in Children.
abstract: The objective of this study was to evaluate health-related quality of life in long-term survivors of mechanical circulatory support after acute cardiopulmonary failure.
  
  
  
  Prospective follow-up study.
  
  
  
  Single-institutional in a center for congenital heart disease and pediatric cardiology.
  
  
  
  Fifty patients who underwent 58 mechanical circulatory support therapies in our institution from 2001 to 2012. Median age was 2 (0-213) months, and median supporting time was 5 (1-234) days. Indication groups: 1) extracorporeal life support in low cardiac output: 30 cases (52%); 2) extracorporeal cardiopulmonary resuscitation: 13 cases (22%); 3) extracorporeal membrane oxygenation in acute respiratory distress syndrome: four cases (7%); and 4) ventricular assist devices: 11 cases (19%).
  
  
  
  Health-related quality of life was measured using standardized questionnaires according to the age group and completed by either parent proxies in children under 7 years old or the survivors themselves.
  
  
  
  Fifty percentage of the patients were discharged home, and 22 long-term survivors (44%) were studied prospectively for health-related quality of life. Median follow-up period was 4.5 (0.3-11.3) years. Median age at follow-up was 5 (0.6-29) years old. Nineteen long-term survivors filled in the health-related quality of life questionnaires and were classified into three age groups: 0-4 years (n = 7): median health-related quality of life score, 69 (59-86) points; 4-12 years (n = 7): median health-related quality of life score, 50 (48-85) points; older than 12 years (n = 5): median health-related quality of life score, 90 (80-100) points.
  
  
  
  Long-term survivors' health-related quality of life as reported by their parents is lower than that of healthy children. However, the self-assessed health-related quality of life of the patients older than 12 years in our group is comparable to a healthy control population.
authors.affiliation: 1Department of Congenital Heart Disease and Pediatric Cardiology, University Heart Centre Freiburg, Freiburg, Germany. 2Department of Cardiovascular Surgery, University Heart Centre Freiburg, Freiburg, Germany. 3Department of Neuropediatric and Muscle Disorders, University Medical Center, Freiburg, Germany.
authors.forename: Thilo P K
authors.initials: TP
authors.lastname: Fleck
authors.forename: Georg
authors.initials: G
authors.lastname: Dangel
authors.forename: Felix
authors.initials: F
authors.lastname: Bächle
authors.forename: Christoph
authors.initials: C
authors.lastname: Benk
authors.forename: Jochen
authors.initials: J
authors.lastname: Grohmann
authors.forename: Johannes
authors.initials: J
authors.lastname: Kroll
authors.forename: Matthias
authors.initials: M
authors.lastname: Siepe
authors.forename: Rene
authors.initials: R
authors.lastname: Höhn
authors.forename: Janbernd
authors.initials: J
authors.lastname: Kirschner
authors.forename: Friedhelm
authors.initials: F
authors.lastname: Beyersdorf
authors.forename: Brigitte
authors.initials: B
authors.lastname: Stiller
mesh_terms: D000293:Adolescent; D016887:Cardiopulmonary Resuscitation / Q000379:methods; D002648:Child; D002675:Child, Preschool; D015199:Extracorporeal Membrane Oxygenation; D005260:Female; D005500:Follow-Up Studies; D006305:Health Status Indicators; D006353:Heart-Assist Devices; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D017063:Outcome Assessment, Health Care; D011446:Prospective Studies; D011788:Quality of Life; D017741:Survivors