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Objective: To examine the quality of life of adults with congenital heart disease.
Design and setting: Observational, cross sectional study conducted at one general hospital in Birmingham, UK.
Patients: All 471 patients registered at the adult congenital heart disease clinic were sent the 36 item short form health survey (SF-36) to assess their quality of life. Questionnaires were completed by 276 (58.6%) patients (41.7% men; median (interquartile range) age 31.0 (26.3-36.0) years, range 16-85 years).
Results: Surprisingly, patients deemed surgically cured (for example, atrial septal defect repair) had significantly poorer quality of life in all domains (all p < 0.05), except for pain, than the general population, as determined from population normative data. Patients who had received palliative treatment reported quality of life scores similar to those who had never required cardiac surgery and to the general population, although both patient groups had significantly poorer physical functioning and overall general health perception than the general population (all p < 0.01). Patients with inoperable conditions had significantly poorer physical functioning (all p < 0.01) and overall general health perception (all p.< 0.05) than all other patients, and significantly worse quality of life in all domains than the similarly aged general population. Patients with cyanotic conditions had significantly worse quality of life than age and sex matched acyanotic patients (all p < 0.01).
Conclusions: Patients with inoperable or cyanotic conditions and, paradoxically, those deemed surgically cured, had the poorest quality of life among adults with congenital heart disease. However, all adults with congenital heart disease had significantly poorer levels of physical functioning and overall general health perception then similarly aged people in the general population.
Congenital heart disease is no longer limited to paediatric clinical practice. Medical and surgical advances have resulted in most children with congenital heart disease surviving to adulthood. (1 2) Unfortunately, for many patients with congenital heart disease further investigation and surgical intervention are necessary, and medical treatment and follow up are often life long. (3) It is apparent from clinical practice that the cardiac lesion is not always the major problem for these patients, whereas issues pertaining to quality of life, such as employment, exercise participation, and pregnancy, predominate.
The World Health Organization defined health as "a state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity". (4) Thus, it is important to address not only physical health but also the emotional state and social functioning, together with occupational performance. Quality of life is a multidimensional construct that encompasses these four domains. (5)
Over the past 15 years interest in the quality of life among patients with congenital heart disease has increased. Despite this interest, little is known about the day to day functioning and wellbeing of adults with congenital heart disease. The majority of studies have investigated the psychosocial adjustment and development of children and adolescents with congenital heart disease (6 7) but have not explicitly examined quality of life. To date, studies have assessed quality of life in terms of marital status, employment status, level of physical activity, educational achievement, and number of natural offspring, rather than objectively assessing quality of life by using standardised measures. (8-11) Studies that have attempted to assess quality of life have usually included patients with relatively simple cardiovascular abnormalities, such as ventricular septal defect, and isolated aortic or pulmonary stenosis, (8 9) or have examined one particular diagnostic group. (9 12) However, these studies report that quality of life and patients' personal health assessments were comparable with those of the general population. (8 9 12)
The present study aimed at evaluating quality of life in all adult patients with congenital heart disease registered at the Adult Congenital Heart Disease clinic in Birmingham, UK.
All patients, aged 16 years or older on 1 January 2000, registered at the Adult Congenital Heart Disease clinic at City Hospital, Birmingham, were eligible for inclusion in the study. Four hundred and seventy one eligible patients were identified by our computerised database. Demographic data including age, sex, and ethnicity, as well as clinical data relating to the anatomical diagnosis, current clinical status, and present clinical management, were also established from the computerised database. Cyanosis was defined as an arterial oxygen saturation of < 90% at rest. To preserve anonymity, all patients were allocated a study number and data were collected by a non-clinical member of the team. The research protocol was approved by the ethics committee review board before the start of the study and all study participants provided informed consent.
Patients were assigned to one of five treatment categories: firstly, curative cardiac surgery ("surgically cured" …