Aim: Treatment with implantable cardioverter defibrillators (ICDs) increases survival in patients suffering from ventricular tachyarrhythmias. The physiologic effects of having an ICD implanted are well-known but there is still limited knowledge about quality of life (QoL), especially in a long-term perspective. Therefore, the aim of this prospective, follow-up study was to describe and compare uncertainty and QoL at year 1 and year 5 after implantation in patients living with an ICD.

Methods: The Mishel Uncertainty in Illness Scale-community version (MUIS-C) and Quality of Life Index-cardiac version (QLI) was used for 35 patients, living with an ICD in average 6 years 9 months. Higher scores indicate higher uncertainty and QoL.

Results: An improvement in uncertainty was found at year 5 compared to year 1 (p=0.009), and at year 5 compared to baseline (p = 0.009). Overall QoL decreased at year 1 compared to baseline (p = 0.033). QoL in the socioeconomic domain decreased at year 1 compared to baseline (p = 0.006), and increased at year 5 compared to year 1 (p=0.027). QoL in the family domain decreased at year 5 compared to year 1 (p=0.039), and at year 5 compared to baseline (p=<0.001).

Conclusion: Patients with ICD feel better at year 5 than at year 1. The QoL is reasonable good 5 years after implant once they have passed the first years and adapted to lifestyle changes, and patients are more certain and perceive the ICD as a parachute of life.