This study aimed to assess the quality of life (QOL) experienced by adolescents and young adults with congenital heart disease (CHD) and to determine which factors negatively affect adjustment and which factors increase resilience. The participants in the study were 74 patients with CHD (41 males and 33 females) ranging in age from 12 to 26 years (mean age, 18.76 ± 3.86 years). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding topics such as social support, family educational style, selfimage, and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed a self-report questionnaire (WHOQOL-BREF) for assessment of QOL. Compared with the Portuguese population as a whole, the study patients had better QOL, especially with regard to the environmental dimension (t = 3.754; P = 0.000) and social relationships (t = 2.333; P = 0.022). Patients who had undergone surgery experienced poorer QOL in the physical dimension (t = -1.989; P = 0.050), in social relationships (t = -2.012; P = 0.048) and overall (Mann-Whitney U = 563.000; P = 0.037). Social support played a positive role in the QOL of the patients, both in the physical dimension (t = 3.287; P = 0.002) and in social relationships (t = 3.669; P = 0.000). A higher school achievement also was associated with higher levels of QOL overall (Mann-Whitney U = 457.000; P = 0.046) as well as in the physical (t = 2.045; P = 0.045) and environmental (t = 2.413; P = 0.018) dimensions. Physical limitations had a detrimental impact on general QOL (Mann-Whitney U = 947.500; P = 0.001) and on the physical (t = -2.910; p = 0.005) and psychological (t = -2,046; P = 0.044) dimensions. Patients with CHD tended to perceive QOL as better when their social networks were supportive.

Objectives: To assess the perception of the quality of life of adolescents and young adults with congenital heart disease and to examine the variables that have a negative impact on it and that add a resilience effect. Methods: A total of 22 male and 18 female patients, aged 12-26 years, of whom 27 were admitted to surgery and 13 were not, participated in this study. All patients had complete medical records and were interviewed once; demographic and clinical data were collected, and patients filled a questionnaire on quality of life, the WHOQOL-BREF, and underwent an interview on social support, educational style, self-image, functional limitations, and emotional adjustment. Results/Conclusions: Our patients showed a better perception of quality of life than did the general population, on the basis of psychological, social relationship and environment scales. Older patients hold a better perception of quality of life on the psychological scale. Cyanosis did not show any significant impact over perception of quality of life decay; however, the number of surgical procedures and the persistence of moderate-to-severe residual injuries had considerable detrimental effect. Social support had an impact on increasing resilience, promoting adjustment to illness. Several factors may play a role in adjustment to congenital heart disease, either improving the perception of quality of life or worsening it. We may conclude that some buffer variables on congenital heart disease may play roles in increasing the perception of quality of life of patients during their lifetime, social support probably explaining why the perception of quality of life is better than in the normal population. The number of surgeries and the moderate-to-severe residual injuries, however, reverted that effect.

No abstract

Empowerment is usually defined as a process of promoting the sense of competence and control as a means of capacitating individuals to improve their life conditions. The aim of this study was to describe the psychometric qualities of the Portuguese Rheumatic Disease Empowerment Scale (P-RES-8), an 8-item measure of empowerment for patients with rheumatic disease. The study enrolled 81 patients with rheumatic diseases. Participants filled in the P-RES-8, the Portuguese validated version of the Medical Outcomes Survey Short Form-36 (MOS SF-36), and a questionnaire including sociodemographic data and disease-related variables. To evaluate the dimensionality of the P-RES-8 scale, an exploratory factor analysis was conducted, and its reliability was assessed by Cronbach’s α. The validity of this measure was assessed by analyzing the correlations between empowerment, quality of life, and other relevant variables (education level and illness duration). The P-RES-8 proved to be a reliable 1-dimensional measure of empowerment in patients with rheumatic disease (Cronbach’s α = 0.94). Empowerment was positively related to quality of life. Particularly, the findings showed positive associations between empowerment, assessed by the P-RES-8, and each of the 8 domains of the MOS SF-36. The associations were stronger for mental health and general health perception. The results also revealed that empowerment is positively associated with a higher education and more years after the diagnosis. The findings provide support for the adequacy of the P-RES-8 as a measure of empowerment in patients with rheumatic disease. Moreover, empowerment showed to be an important variable in the assessment of patients’ quality of life.