Investigación reciente

OBJECTIVES: It was examined whether women and men (17–45 years) with operated congenital heart disease differ with respect to chances of employment. Patients were compared with the general population.
DESIGN: Patients (n = 314) were classified by type of surgery (curative, reparative, palliative) as indicator of initial severity of disease. The second classification was performed according to a system proposed by the New York Heart Association in order to take reported impairments into account. Controls (n = 1165) consisted of a 10% randommsample drawn from the German Socio-Economic Panel.
RESULTS: Chances of full-time employment decreased as disease severity increased. Chances of part-time and minor employment were higher in patients than among controls. These general effects were because of male patients, while the employment patterns of women did not differ from the control group. Independent of patient status, women were more likely to have lower rates of full-time employment, and the rates of part-time and minor employment were higher.
CONCLUSION: Long-term adaptation to impairments as a result of congenital heart disease differs between women and men with respect to employment status.

The purpose was to examine the relationship between the complexity of structural heart disease and psychological well-being in adults with congenital cardiac disease. A total of 380 patients registered at the Adult Congenital Heart Clinic in Calgary, Alberta, Canada were surveyed. The patients were mailed a socio-demographic questionnaire and an instrument to measure psychological well-being. The instrument of psychological well-being measures six dimensions: positive relations with others, autonomy, environmental mastery, personal growth, purpose in life, and self-acceptance.
There was no statistically significant difference in the mean scores of each of the six dimensions of psychological well-being between those patients with simple and complex malformations. Two-way analysis of variance, and multivariate analysis of variance, found significant differences in mean scores for dimensions when other socio-demographic variables were included in the analysis. For example, significantly higher mean scores for the dimension of purpose in life was found in patients who obtained a higher level of education (p = 0.009), and in patients who were employed (p < 0.001). Psychological well-being is not affected by the complexity of the structural congenital cardiac disease. Certain socio-demographic variables that impact psychological well-being, nonetheless, must be considered when developing multidisciplinary programmes to care for young adults with congenitally malformed hearts.

The patient sample consisted of 314 females (42.1%) and males who underwent surgery for CHD (mean age at surgery 7.3 years, SD 7.8). According to the type of surgery, patients were classified as curative, reparative, or palliative. Consequently, the three groups reflect increasing severities of the initial heart defect. Controls consisted of individuals who participated in the 2002 survey of the German Socio-Economic Panel. All individuals with complete sociodemographic information were included, and the final sample consisted of 4864 women (46.1%) and men (mean age 32.5 years).
Once having entered the labour market, intergenerational social mobility between patients and controls did not differ. For upward mobility respondents' social background was the key determinant; the respective standardized regression effect was beta=0.66. After dividing the study population, the social background turned out to having a slightly stronger effect in patients than in controls. For downward mobility effects of the social background were smaller than for upward mobility. In economically active patients CHD severity did not determine social mobility.
A large proportion of patients could not or did not enter the labour market. Those who did experienced social mobility rates that are comparable with the general population.

This study compared the rates of employment, and advice offered concerning careers, in adults with congenital heart disease and controls. The goal was to assess the impact of the severity of the congenital cardiac malformation on the chances for employment.
We solicited responses from 299 adults with congenitally malformed hearts, asking them to answer questions from a questionnaire posed at interview by a trained nurse. The adults were asked to give an identical questionnaire to a friend to act as a control.
The responses showed that 51 of 156 (33 per cent) adults with congenital heart disease were unemployed, and 37 of 151 (25 per cent) had been unemployed for more than a year. This is significantly more than 25 of 156 (16 per cent) matched controls unemployed, and 5 of 151 (3 per cent) controls unemployed for more than a year. Almost one-fifth of the adults with congenital heart disease (19 per cent) had received advice regarding their career which they found helpful, which is significantly fewer than the 31 per cent of controls. More (42 per cent) had been given advice against certain occupations than controls (11 per cent). Receiving career advice was significantly associated with employment in the population with congenitally malformed hearts, with almost three-quarters (73 per cent) of those given advice being employed compared to 46 per cent of those not given advice. Whatever the severity of their disease, adults with congenitally malformed hearts are more likely to be unemployed than matched controls.

The objective was to evaluate job participation, career-related problems, and actual job problems in adults with complex congenital heart disease (CHD) compared with adults with mild CHD and reference groups using a cross-sectional study.
In total, 76 patients with complex CHD and 80 with mild CHD (age range, 17-32 years) completed a self-reported questionnaire on employment and handicaps, with reference data available (response rate, 70%).
In the study groups, 45 (59%) of 76 patients with complex CHD had a paid job compared with 61 (76%) of 80 patients with mild CHD. Patients older than 25 years with complex CHD had significantly lower job participation (64%) than the general population (83%). Type of CHD and level of education were significantly and independently related to job participation. Of the 76 patients with complex CHD, 42 (55%) experienced disease-related career problems, in contrast to only 1 patient with mild CHD. Both CHD groups had more job-related mobility handicaps than did the reference group. However, in the mild CHD group, handicaps could be attributed to additional non-cardiac diseases. Patients with complex CHD have reduced job participation compared with patients with mild CHD and the general population. Many receive disability benefits or experience career problems or job handicaps. Career counseling focusing on physical abilities and level of education may help prevent or reduce these job-related problems.

This population-based study was designed to examine the psychosocial outcome of Finnish patients who had been operated on for congenital heart disease during childhood. A questionnaire was mailed to 3789 adult patients who had been operated on for congenital heart defects in Finland. Of these, 2896 (76%) answered the questionnaire. The mean age of patients was 33 years (range: 18-59 years), and they had had their first operation 9 to 46 years earlier.
The patients had coped well with their defects when compared with the general Finnish population. The educational level of patients was comparable to and employment level was higher than expected (70% vs. 66%, respectively). They were living in a steady relationship as often as the general population, but the number of parents among the patients was lower than that expected (47% vs. 49%, respectively). The incidence of congenital heart disease among the 2697 children of the patients was 2.4%. Our results confirm that in addition to high survival rate, the long-term psychosocial outcome of patients with surgically treated congenital heart defects is good if they do not have any additional syndromes that cause mental retardation.

Since knowledge about the psychosocial function of adult patients with congenital heart disease is limited, we compared biographical characteristics, and emotional and social functioning of these patients with that of the reference groups. Patients with congenital heart disease (20-46 years), belonging to five diagnostic groups, were subjected to extensive medical and psychological examination 20-33 years after their first open heart surgery. All the patients were seen by the same psychologist, who examined their psychosocial functioning using a structured interview and questionnaires. The majority (78%) was living independently and showed favorable outcome regarding marital status. None of the 20-24-year-old patients had any children. The proportion of adult patients with a history of special education was high (27%). Accordingly, patients showed lower educational and occupational levels compared to reference groups. As regard to the emotional and social functioning (leisure-time activities), the sample showed favorable results.
Overall, this sample of patients with congenital heart disease seemed capable of leading normal lives and seemed motivated to make good use of their abilities.