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Perceived health after percutaneous pulmonary valve implantation: in-depth interviews of patients and next-of-kin
  1. Brith Andresen1,2,
  2. Marit Helen Andersen3,
  3. Harald Lindberg2,4,
  4. Gaute Døhlen5,
  5. Erik Fosse1,4
  1. 1The Intervention Centre, Oslo University Hospital, Oslo, Norway
  2. 2The Department of Cardiothoracic Surgery, Oslo University Hospital, Rikshospitalet, Oslo, Norway
  3. 3Division of Cancer Medicine, Surgery and Transplantation, Oslo University Hospital, Rikshospitalet, Oslo, Norway
  4. 4Faculty of Medicine, Institute for Clinical Medicine, University of Oslo, Norway
  5. 5The Department of Pediatric Cardiology, Oslo University Hospital, Rikshospitalet, Oslo, Norway
  1. Correspondence to Dr Brith Andresen; brandres{at}ous-hf.no

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.

Design Qualitative explorative design with individual in-depth interviews.

Setting 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.

Participants 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.

Main outcome measure 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.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

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