title: Perceived health after percutaneous pulmonary valve implantation: in-depth interviews of patients and next-of-kin.
abstract: OBJECTIVE
  Percutaneous pulmonary valve implantation is an alternative to open heart surgery in selected patients with pulmonary outflow tract disorder. The technique may reduce the number of open-chest surgeries in these patients. This study was conducted to understand how the patients and their next-of-kin experienced this new treatment option.
  
  
  METHODS
  Qualitative explorative design with individual in-depth interviews.
  
  
  METHODS
  Oslo University Hospital, the only cardiac centre in Norway offering advanced surgical and interventional treatment to patient with congenital heart defects, serving the whole Norwegian population.
  
  
  METHODS
  During a 2-year period a total of 10 patients, median age 17 (7-30) and 18 next-of-kin were consecutively selected for individual in-depth interviews 3-6 months after the pulmonary valve implantation. The verbatim transcripts were analysed using a phenomenological methodology.
  
  
  RESULTS
  Patients emphasised the importance of regaining independence and taking control of daily life shortly after the new interventional treatment. Renewed hope towards treatment options was described as 'a light in the tunnel'. Next-of-kin emphasised the importance both for the patient and their family of resuming normal life quickly after the procedure. The physical burden was experienced as minor after the minimally invasive intervention, compared to their previous experience with surgical procedures.
  
  
  METHODS
  The importance of maintaining normality in everyday life for a good family function.
  
  
  CONCLUSIONS
  The repeated surgeries during infancy and adolescence of patients with congenital heart disease represent a heavy burden both for the patient and their family. All families especially emphasised the importance of resuming normal life quickly after each procedure. The novel technique of pulmonary valve implantation is thus a favourable approach because of minor interference in daily life.
authors: The Intervention Centre, Oslo University Hospital, Oslo, Norway The Department of Cardiothoracic Surgery, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
authors: Brith
authors: B
authors: Andresen
authors: Division of Cancer Medicine, Surgery and Transplantation, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
authors: Marit Helen
authors: MH
authors: Andersen
authors: The Department of Cardiothoracic Surgery, Oslo University Hospital, Rikshospitalet, Oslo, Norway Faculty of Medicine, Institute for Clinical Medicine, University of Oslo, Norway.
authors: Harald
authors: H
authors: Lindberg
authors: The Department of Pediatric Cardiology, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
authors: Gaute
authors: G
authors: Døhlen
authors: The Intervention Centre, Oslo University Hospital, Oslo, Norway Faculty of Medicine, Institute for Clinical Medicine, University of Oslo, Norway.
authors: Erik
authors: E
authors: Fosse
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D017281:Cost of Illness; D005190:Family / Q000523:psychology; D005260:Female; D006304:Health Status; D019918:Heart Valve Prosthesis Implantation / Q000379:methods*; D006801:Humans; D008297:Male; D009664:Norway; D017060:Patient Satisfaction; D011665:Pulmonary Valve Insufficiency / Q000601:surgery*; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D055815:Young Adult