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Objetivo: Avaliar a qualidade de vida e o comportamento alimentar nas aminoacidopatias, em sócios da Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas (APOFEN). Material e Métodos: Foram convidados todos os doentes portadores de aminoacidopatias, sócios da APOFEN no ano de 2020 (n=80), dos quais Participaram 34 doentes (42,5%) (24 com Fenilcetonúria, 4 com Leucinose, 3 com Tirosinemia tipo1, 1 com Homocistinúria Clássica), a quem foi aplicado um questionário de qualidade de vida da PedsQl e de avaliação de comportamento alimentar. Foi utilizado o teste de correlação de Spearman (rho), teste não paramétrico alternativo à correlação de Pearson para analisar a correlação das variáveis. Resultados: Os resultados encontrados mostram que sentimentos como medo ou tristeza estão fortemente relacionados com a integração na sociedade (nomeadamente o relacionamento com outras pessoas, a dificuldade em fazer amigos e o sentimento de inferioridade), bem como a relação na escola/faculdade/trabalho. O sentimento “medo” e a dificuldade em fazer amigos, apresenta a correlação mais forte, com um coeficiente de Spearman de 0,993. Por outro lado, a preocupação com o que irá acontecer e o facto de faltar à escola/faculdade/trabalho apresentam a correlação menos forte, mas igualmente positiva, com um coeficiente de Spearman de 0,594. Relativamente ao comportamento alimentar, apesar de se existirem diferenças de acordo com as patologias e tolerância das mesmas, verifica-se uma preferência de consumo de produtos hipoproteicos (leite, pão, cereais e bolachas) ao pequeno almoço e refeições intermédias e a preferência pelo consumo de batata e arroz às refeições principais (61% ao almoço e 55,1% ao jantar). Conclusões: Verificam-se correlações fortes, positivas e significativas em todas as variáveis estudadas. Verifica-se uma predominância do consumo de alimentos hipoproteicos, havendo, contudo, consumo de outro tipo de alimentos. Este estudo corrobora a importância de uma intervenção nutricional adequada, bem como de um acompanhamento médico direcionado a estes doentes de forma a potenciar a qualidade de vida global dos mesmos.
Objective: To evaluate the quality of life and eating behavior in aminoacidopathies, in members of the Portuguese Association of Phenylketonuria and Other Metabolic Diseases Material and methods: All patients with aminoacidopathies, members APOFEN, were invited in 2020 (n = 80), of which 34 patients (42.5%) participated (24 with Phenylketonuria, 4 with Leucinosis, 3 with Tyrosinemia type, 1 with Classical Homocystinuria), to whom a PedsQl quality of life questionnaire and assessment of eating behavior were applied. Spearman's correlation test (rho), an alternative non-parametric test to Pearson's correlation, was used to analyze the correlation of variables. Results: The results found show that feelings such as fear or sadness are strongly related to integration in society (namely the relationship with other people, the difficulty in making friends and the feeling of inferiority), as well as the relationship at school / college / work. The feeling of “fear” and the difficulty in making friends, presents the strongest correlation, with a Spearman coefficient of 0.993. On the other hand, the concern about what will happen and the fact of missing school / college / work have a less strong, but equally positive correlation, with a Spearman coefficient of 0.594. Regarding eating behavior, although there are differences according to their pathologies and tolerance of the same, there is a preference for consumption of hypoprotein products (milk, bread, cereals and cookies) for breakfast and intermediate meals and a preference for consumption potatoes and rice for main meals (61% at lunch and 55.1% at dinner) Conclusion: There are strong, positive and significant correlations in all variables studied. There is a predominance of consumption of hypoprotein foods, however, there is consumption of other types of food. This study corroborates the importance of an adequate nutritional intervention, as well as medical follow-up directed to these patients in order to enhance their overall quality of life.
Objective: To evaluate the quality of life and eating behavior in aminoacidopathies, in members of the Portuguese Association of Phenylketonuria and Other Metabolic Diseases Material and methods: All patients with aminoacidopathies, members APOFEN, were invited in 2020 (n = 80), of which 34 patients (42.5%) participated (24 with Phenylketonuria, 4 with Leucinosis, 3 with Tyrosinemia type, 1 with Classical Homocystinuria), to whom a PedsQl quality of life questionnaire and assessment of eating behavior were applied. Spearman's correlation test (rho), an alternative non-parametric test to Pearson's correlation, was used to analyze the correlation of variables. Results: The results found show that feelings such as fear or sadness are strongly related to integration in society (namely the relationship with other people, the difficulty in making friends and the feeling of inferiority), as well as the relationship at school / college / work. The feeling of “fear” and the difficulty in making friends, presents the strongest correlation, with a Spearman coefficient of 0.993. On the other hand, the concern about what will happen and the fact of missing school / college / work have a less strong, but equally positive correlation, with a Spearman coefficient of 0.594. Regarding eating behavior, although there are differences according to their pathologies and tolerance of the same, there is a preference for consumption of hypoprotein products (milk, bread, cereals and cookies) for breakfast and intermediate meals and a preference for consumption potatoes and rice for main meals (61% at lunch and 55.1% at dinner) Conclusion: There are strong, positive and significant correlations in all variables studied. There is a predominance of consumption of hypoprotein foods, however, there is consumption of other types of food. This study corroborates the importance of an adequate nutritional intervention, as well as medical follow-up directed to these patients in order to enhance their overall quality of life.
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Aminoacidopatias Qualidade de vida Comportamento alimentar Aminoacidopathies Quality of life Eating behavior