To Örebro University

Although pectus excavatum (PE), the most common congenital chest wall deformity, can cause both physical and psychosocial suffering, minimal invasive repair for PE (MIRPE) can improve outcomes regarding health-related quality of life (HRQoL). However, MIRPE has not been evaluated in a Swedish context and lacks qualitative explorations. This thesis examines the HRQoL and experiences of living with PE before and after MIRPE. Study I translated, culturally adapted, and evaluated the psychometrical properties of the Nuss Questionnaire modified for Adults (NQ-mA) and the Single Step Questionnaire. The Swedish version of NQmAwas validated for assessment after MIRPE. Study II evaluated HRQoL in patients who had undergone MIRPE. The results show men have better HRQoL than women. Older participants and those who still had their bar in place had significantly lower HRQoL. Study III described the experiences of living with PE before MIRPE. The qualitative findings show that PE was a heavy burden, causing both physical and social limitations in everyday life. Although the participants experienced that healthcare providers have limited knowledge about PE, MIRPE instilled hope for a better life after surgery. Study IV, a mixed-methods design, aimed to gain a comprehensive understanding of experienced HRQoL after MIRPE. Participants experienced a strengthened sense of self and an increased freedom in life after MIRPE. For some of the participants, however, surgery did not solve all their problems. In conclusion, a Swedish HRQoL measurement for individuals with PE is valid for use after MIRPE. PE is a heavy burden and healthcare providers need to increase their knowledge about PE. Although HRQoL improves after MIRPE, careful preoperative information must be provided for individuals to make informed decisions.