In good heart”: a study of the factors associated with health- related quality of life in adult congenital heart disease.

Aims: The overall aim of the thesis is to study the Health-Related Quality of Life (HRQoL) in Adult Congenital Heart Disease (ACHD). The thesis examines the impact of ACHD on HRQoL, the demographic, clinical, and psychosocial factors associated with HRQoL, and changes in these factors over time. Methods: The thesis consists of three studies, including a cross-sectional, a longitudinal, and a qualitative. Three hundred and fourteen individuals, from four diagnostic groups (Simple, Tetralogy of Fallot-ToF, Transposition of the Great Arteries-TGA, & Single Ventricle-SV) were recruited from The Heart Hospital, London and completed the cross-sectional study. Clinical measures were collected by a consultant cardiologist and participants completed a range of psychosocial measures, including generic and disease-specific measures of HRQoL. One-sample t-tests were conducted to examine differences between the whole sample and diagnostic groups and general population norms and ANOVAs for differences between the four diagnostic groups in HRQoL. Hierarchical multiple regressions were employed to examine the factors associated with HRQoL. One hundred and eighty eight participants completed the longitudinal study (mean follow-up: 3.3 years). Changes in HRQoL and other psychosocial variables were explored using Hierarchical Linear Models (HLM). Semi-structured interviews were conducted with twelve participants to explore their experiences. Results: Participants reported diminished HRQoL in some physical and psychosocial domains. The SV group reported poorer physical and psychosocial HRQoL in various domains compared with the general population norms and some of the other diagnostic groups, whilst the Simple group reported impaired psychosocial HRQoL. Illness perceptions explained the largest proportion of variance in generic (physical and psychosocial) and disease-specific HRQoL. After accounting for demographic and clinical characteristics, psychosocial factors including perceptions about the symptoms and consequences of ACHD, the use of self-blame as a coping strategy, and mood were independently associated with HRQoL. Clinical factors, HRQoL, coping, and social support remained stable over time, whilst some changes were observed in illness perceptions and anxiety. The qualitative interviews provided further insight into the physical, psychosocial, and occupational consequences of ACHD, the people’s efforts to adjust to their condition and treatment and gain perspective, and the role of their social environment. Discussion: The theoretical and clinical implications of the findings are discussed. People with ACHD may benefit from routine psychological assessment and provision of clear and timely information and interventions addressing negative illness perceptions, depression, and anxiety