It's part of who I am: The impact of congenital heart disease on adult identity and life experience

Background As clinical care and research in adult congenital heart disease (ACHD) increasingly include a focus on quality of life, hearing and reflecting on our patients’ experiences must be a priority. The objective of this study was to describe how living with this chronic illness has affected the adult lives of patients living with ACHD. Methods We conducted a qualitative study of 25 participants in which we asked about the impact of ACHD on their quality of life. We used thematic analysis to analyze the interview data and identified themes reflecting patients’ reported experiences. Results Study participants were a mean age of 38 years (range 21–63 years) and reported good functional status. ACHD was characterized as simple (24%), moderate (32%), or complex (44%). Three major themes arose: 1) impact of ACHD on identity, including perception of “normal,” self-esteem, and motivation; 2) sources of emotional distress; and 3) influence on adult decision-making, including careers and relationships. Conclusion Living with ACHD impacts important aspects related to self-perceived quality of life. Addressing these concerns is important to providing comprehensive, patient-centered ACHD care.