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Qualidade de vida e preditores de qualidade de vida em adolescentes com doença das células falciformes
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Resumo(s)
A Doença das Células Falciformes (DCF) é a hemoglobinopatia com maior incidência a nível mundial, contudo, é ainda considerada rara. As manifestações e as características desta doença têm diversos impactos nos domínios da qualidade de vida relativa à saúde (QVRS), visto que os doentes experienciam com frequência crises dolorosas e outras comorbilidades, que os colocam em risco de desenvolverem perturbações psicossociais e ter pior QVRS. Este estudo pretendeu identificar níveis de qualidade de vida, sintomatologia emocional e comportamental e identificar preditores da QVRS. A amostra é constituída por 63 adolescentes, entre os 13 e os 18 anos, e 63 pais/cuidadores. Os participantes responderam ao Pediatric Quality of Life Sickle Cell Disease Module (PedsQL-SCD) e ao Pediatric Symptom Checklist-17 (PSC-17). Os principais resultados sugerem que os adolescentes reportam baixa QVRS, com piores resultados nas subescalas relativas ao impacto da dor, à preocupação com a imprevisibilidade da doença e à comunicação sobre a doença. No autorrelato dos adolescentes verificaram-se associações significativas entre perturbações emocional e comportamentais, preocupação com a imprevisibilidade da doença, as emoções negativas, o tratamento e a comunicação sobre a doença; e entre o risco para problemas de internalização e as emoções negativas, o tratamento e a comunicação com profissionais de saúde e terceiros sobre a doença. No relato dos pais foi possível observar mais associações significativas, comparativamente aos filhos. Todavia, não existem diferenças significativas na comparação pais-filhos, à exceção da presença de indicadores de perturbação emocional ou de comportamento e problemas de atenção, com os pais a relataram valores mais satisfatórios de QVRS. As hospitalizações, as idas às urgências, os problemas de atenção e os problemas de internalização emergiram como os principais preditores da QVRS. Desta forma, estes resultados contribuem para melhorar as intervenções individuais, com vista a promover a QVRS e a saúde mental dos adolescentes com DCF.
Sickle Cell Disease (SCD) is the most common hemoglobinopathy in the world, but is still considered rare. The manifestations and characteristics of this disease have several impacts on the health-related quality of life (HRQoL) domains, as they often experience pain crises and other comorbidities, which put them at risk of developing psychosocial disorders and worse HRQoL. This study aimed to identify levels of quality of life, emotional and behavioral symptoms and to identify predictors of HRQoL. The sample consisted of 63 adolescents, aged between 13 and 18, and 63 parents/caregivers. Participants responded to the Pediatric Quality of Life Sickle Cell Disease Module (PedsQL-SCD) and the Podiatric Symptom Checklist-17 (PSC-17). The main results suggest that adolescents reported low HRQoL, with worse scores in the subscales related to the impact of pain, concern about the unpredictability of the disease, and communication about the disease. In the adolescent’s self-report, there werw significant associations between emotional and behavioral disturbances and concern about the unpredictability of the disease, negative emotions, treatment and communication about the disease; and between the risk for internalization problems and negative emotion, treatment, and communication with health professionals and third parties about the illness. In the parent’s reports, it was possible to observe more significant associations, compared to the children. However, there are no significant differences in parent-child comparison, except for the presence of indicators of emotional or behavioral disturbance and attention problems, with parents reporting more satisfactory HRQoL values. Hospitalizations, emergency trips, attention problems and internalization problems have emerged as the main predictors of HRQoL. Thus, these results contribute to improving individual interventions aimed at promoting HRQoL and mental health of adolescents with SCD.
Sickle Cell Disease (SCD) is the most common hemoglobinopathy in the world, but is still considered rare. The manifestations and characteristics of this disease have several impacts on the health-related quality of life (HRQoL) domains, as they often experience pain crises and other comorbidities, which put them at risk of developing psychosocial disorders and worse HRQoL. This study aimed to identify levels of quality of life, emotional and behavioral symptoms and to identify predictors of HRQoL. The sample consisted of 63 adolescents, aged between 13 and 18, and 63 parents/caregivers. Participants responded to the Pediatric Quality of Life Sickle Cell Disease Module (PedsQL-SCD) and the Podiatric Symptom Checklist-17 (PSC-17). The main results suggest that adolescents reported low HRQoL, with worse scores in the subscales related to the impact of pain, concern about the unpredictability of the disease, and communication about the disease. In the adolescent’s self-report, there werw significant associations between emotional and behavioral disturbances and concern about the unpredictability of the disease, negative emotions, treatment and communication about the disease; and between the risk for internalization problems and negative emotion, treatment, and communication with health professionals and third parties about the illness. In the parent’s reports, it was possible to observe more significant associations, compared to the children. However, there are no significant differences in parent-child comparison, except for the presence of indicators of emotional or behavioral disturbance and attention problems, with parents reporting more satisfactory HRQoL values. Hospitalizations, emergency trips, attention problems and internalization problems have emerged as the main predictors of HRQoL. Thus, these results contribute to improving individual interventions aimed at promoting HRQoL and mental health of adolescents with SCD.
Descrição
Dissertação de mestrado, Psicopatologia do Desenvolvimento da Criança e do Adolescente – Prevenção e Intervenção, 2023, Universidade de Lisboa, Faculdade de Psicologia
Palavras-chave
Qualidade de vida Adolescentes Saúde mental Dor Doenças Hemoglobinopatias Perturbações emocionais Dissertações de mestrado - 2023