Perceived health after percutaneous pulmonary valve implantation: in-depth interviews of patients and next-of-kin

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 36 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.