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.
ResumoObjetivos: Caracterizar a população de adolescentes e jovens adultos com cardiopatias congénitas (CC) ao nível do seu ajustamento psicossocial e morbilidade psiquiátrica, bem como avaliar a qualidade de vida (QV), para perceber quais são as variáveis com impacto na vida e na adaptação à doença. População e métodos: Participaram 74 pacientes com CC, sendo 41 do sexo masculino e 33 do sexo feminino, com idades entre 12-26 (média = 18,76 ± 3,86). Foram recolhidos os dados demográficos e clínicos mais relevantes dos pacientes e foi aplicado um conjunto de instrumentos, incluindo uma entrevista semiestruturada sobre tópicos de suporte social, estilo de educação na família, autoimagem e limitações físicas, uma entrevista psiquiátrica estandardizada e questionários para avaliar o ajustamento psicossocial na forma de autorrelato (YSR e ASR) e relato dos cuidadores (CBCL e ABCL), bem como um questionário de avaliação da qualidade de vida (WHOQOL-BREF). Resultados: O sexo feminino relatou mais ansiedade/depressão (u = 952,500; p = 0,003), alterações do pensamento (u = 929,500; p = 0,005) e comportamento agressivo (u = 999,000; p = 0,000). Pacientes com CC complexas relataram mais alterações de pensamento (u = 442,000; p = 0,027) e internalização (u = 429,000; p = 0,021). Comparativamente com a população portuguesa, os nossos participantes apresentaram melhor QV nos domínios relações sociais (t = 2,333; p = 0,022) e ambiente (t = 3,754; p = 0,000). Os pacientes que não foram submetidos a intervenções cirúrgicas revelaram melhor QV nos domínios físico (t = −1,989; p = 0,050), de relações sociais (t = −2,012; p = 0,048) e QV geral (u = 563,000; p = 0,037). A presença de um melhor suporte social está relacionada com uma melhor QV nos pacientes em todos os domínios avaliados, com destaque para o físico (t = 3,287; p = 0,002) e relações sociais * Autor para correspondência. Correio eletrónico: memilia.areias@cespu.pt (M.E.G. Areias).
Ajustamento psicossocial; Cardiopatias congénitas; Morbilidade psiquiátrica; Qualidade de vida Resumo Objetivos: Caracterizar a população de adolescentes e jovens adultos com cardiopatias con-génitas (CC) ao nível do seu ajustamento psicossocial e morbilidade psiquiátrica, bem como avaliar a qualidade de vida (QV), para perceber quais são as variáveis com impacto na vida e na adaptação à doença. População e métodos: Participaram 74 pacientes com CC, sendo 41 do sexo masculino e 33 do sexo feminino, com idades entre 12-26 (média = 18,76 ± 3,86). Foram recolhidos os dados demo-gráficos e clínicos mais relevantes dos pacientes e foi aplicado um conjunto de instrumentos, incluindo uma entrevista semiestruturada sobre tópicos de suporte social, estilo de educação na família, autoimagem e limitações físicas, uma entrevista psiquiátrica estandardizada e ques-tionários para avaliar o ajustamento psicossocial na forma de autorrelato (YSR e ASR) e relato dos cuidadores (CBCL e ABCL), bem como um questionário de avaliação da qualidade de vida (WHOQOL-BREF). Resultados: O sexo feminino relatou mais ansiedade/depressão (u = 952,500; p = 0,003), alterações do pensamento (u = 929,500; p = 0,005) e comportamento agressivo (u = 999,000; p = 0,000). Pacientes com CC complexas relataram mais alterações de pensamento (u = 442,000; p = 0,027) e internalização (u = 429,000; p = 0,021). Comparativamente com a população por-tuguesa, os nossos participantes apresentaram melhor QV nos domínios relações sociais (t = 2,333; p = 0,022) e ambiente (t = 3,754; p = 0,000). Os pacientes que não foram submeti-dos a intervenções cirúrgicas revelaram melhor QV nos domínios físico (t = −1,989; p = 0,050), de relações sociais (t = −2,012; p = 0,048) e QV geral (u = 563,000; p = 0,037). A presença de um melhor suporte social está relacionada com uma melhor QV nos pacientes em todos os domínios avaliados, com destaque para o físico (t = 3,287; p = 0,002) e relações sociais * Autor para correspondência. Correio eletrónico: memilia.areias@cespu.pt (M.E.G. Areias).
Introduction: High rates of survival in Congenital Heart Disease (CHD) allowed patients to face different challenges in life cycle, and made the topics on adjustment and quality of life more and more central in healthcare. Hypothesis: We tested the hypothesis that CHD has a negative impact over psychosocial adjustment, psychiatric morbidity, quality of life and school performance, and that the severity of disease and the number of surgeries increase the negative impact over adjustment and the social support generates a buffer, good effect on it. Objective: We aimed to study Quality of Life (QOL), Psychosocial Adjustment (PSA), Psychiatric Morbidity, School Performance, Physical Limitations, and Social Support of adolescents and young adults with CHD. Methods: We evaluated 110 CHD patients, 62 males, aged from 12 to 26 years old (M=18.00 ± 3.62), 58 cyanotic. The participants were interviewed on such topics as social support, family/educational background, self-image, physical limitations and emotional adjustment, were administered a standardized psychiatric interview (SADS-L) and completed self-report questionnaires on QOL (WHOQOL-BREF) and PSA (YSR and ASR). Observational versions of the same questionnaires (CBCL, ABCL) were filled by one of their relatives. Full clinical and demographic history was collected. Results: We found a 22% rate of lifetime prevalence of psychopathology (14.5% in males and 31.3% in females) and 50% of school retentions (M=1.50 years + 0.50). Patients with severe forms of CHD showed worse PSA than those with moderate and mild forms of illness (internalization: u=939.000; p=0.030), the cyanotic versus acyanotic and those with moderate-to-severe residual lesions versus mild ones have worse QOL on physical dimension; those submitted to surgery showed worse QOL on physical (t=-2.525; p=0.013), psychological (t=-2.394; p=0,018), social relationships (t=-2.502; p=0,014) and general (u=1294,000; p=0.006) dimensions, and worse PSA (more withdrawn: u=719,000; p=0,037). Social support has a great impact improving patients’ physical (t=2.707; p=0,008), psychological (t= 2.755; p=0.007), social relationships (t=4.976; p=0,000), environment (t=3.085; p=0,003) and general (u=623.500; p=0,000) QOL and poorer social support resulted in more withdrawn (u=557.500; p=0.000) and social problems (u=748.500; p=0,023). Patients with more physical limitations showed worse physical (t=-2.093; p=0,039), psychological (t=-2.674; p=0.009) and general (u=971.500; p=0,002) QOL and more withdrawn (u=1023.000; p=0,015). Female patients showed more somatic complaints (u=260.000;p=0,011), anxiety/ depression (u=984.000;p=0,002), aggressive behavior (u=920.500;p=0,001), thought problems (u=1069.500;p=0,010), internalization (u=869.000;p=0,000) and externalization (u=1163.000; p=0,050). Good performance in school also showed a significant impact incrementing QOL and PSA. Conclusion: We concluded that we should set a special emphasis in maximizing social support and improving school performance, when supplying care in CHD, as they have a positive impact over self-confidence of patients and life adjustment.
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