Sudden cardiac death among the young in Sweden 1992-1999 : from epidemiology to support of the bereaved

Sudden cardiac death (SCD) in a young person is a rare but tragic event, and the potential of prevention is unknown. The aim of this thesis is to contribute to the prevention by analysing SCD in the young in Sweden during the period 1992-1999. Data of SCD in the young based on a national registry is not previously reported. The approach is broad, covering the spectrum from epidemiology to supportive needs of families confronted with SCD. The survey methods comprised analyses of national registries, questionnaires, personal interviews, forensic-, police-, medical- and military conscription records. The SCD group selected from the database of the National Board of forensic Medicine consisted of 181 persons, 15 to 35 years old, who had suffered an SCD during 1992-1999 in Sweden, 132 men (73 %) and 49 women (27 %). The mean incidence was 0.93 per 100,000 per year. The trend showed no decrease during the surveyed years, 1992-1999. The most common diagnoses were the structurally normal heart (21 %), coronary artery disease (18 %), and dilated cardiomyopathy (12 %). In a study group of 162 individuals (19 cases of aortic aneurysm, 17 men and two women, were excluded), ECGs, symptoms and lifestyle factors were analysed and related to the autopsy findings. ECGs were available in 66 individuals (59 men and seven women) and 50 % of these were pathological. The most frequent aberrations were repolarisation abnormalities and in half of the cases with more than one ECG a development in a pathological direction was seen. In four out of ten seeking medical advice because of symptoms an ECG was taken and three of these were pathological. Possibly cardiac-related alpitations were common, but also non-specific symptoms such as fatigue after an influenza- like illness. It was not possible to link a certain sign or symptom to a specific diagnosis. In 26 (16 %) there was a family history of SCD. Physical activity and body mass index (BMI) in men were the same as in a control group, whilst women had a higher BMI and a lower level of physical activity than the controls. In coronary artery disease deaths there were a high percentage of smokers and BMI was higher than in the controls in both sexes. Competing athletes more often died during physical activity than non-athletes, but were not overrepresented in the SCD group. The majority of the athletes who died during physical activity had an underlying structural cardiac disease. Death during sleep was the most common mode of death in subjects with structurally normal heart. A lack of supportive structures in the handling of bereaved relatives were disclosed in the interviews. Most participants felt that they had been left mainly to themselves to find information and support. A common reflection from the bereaved was that there is a need of the same supportive routines in cases of a single death as in accidents where there are several casualties. The bereaved had a need of getting an explanation and a need of supportive structures. The cognitive dimension of understanding and the emotional dimension of being understood were found to be significant for the complex processes of mourning and recreating one’s life as a bereaved. In summary, SCD was uncommon in the young, but the incidence was not decreasing during the study period. The most common autopsy findings were the structurally normal heart and coronary artery disease. Symptoms preceding SCD were common but often misinterpreted. The SCD group was very similar to the normal population with regard to life style factors. In certain cardiac disorders physical activity seemed to trigger sudden death, whilst in others death during sleep was the most common mode of death. There is no single test which predicts if a person is at risk of SCD. A further cardiac evaluation in cases with pathological ECGs, and in cases with a positive family history or serious unexplained symptoms such as syncope, might permit the early identification of persons at risk of SCD. ECG is an underused tool in the investigation of symptoms, and a database with old ECGs available for comparison could be useful in the prevention of SCD. There is a need of better care of the bereaved, and based on our findings we propose the introduction of a supportive program