Abstract
Diet-therapy represents an elective approach to the treatment of several inherited metabolic diseases (IMD). Studies suggest that living with chronic diseases which are treated with dietary management may adversely affect eating attitudes and behaviors and may increase susceptibility to the development of eating disturbances, and subsequently nutritional unbalances. Eating disorders (ED) are a group of psychopathological disorders that affect the patient's relationship with food and his own body and that are manifested mainly in adolescence and in young-adult age. The identification of eating-related problems is important because deviations in dietary adherence are associated with worst outcomes, for most IMD patients. Morgan et al., developed and tested a tool for detecting ED in community settings— SCOFF questionnaire. Several other questionnaires are available for screening ED in community settings and some have been applied to patients in hospital settings. In the clinical practice, health professionals feel the need to screen for this ED in specific patients, who have higher risk for ED, especially those patients who have to follow strict dietary treatments. An example of this is the IMD patients. To our knowledge, in Portugal there is not available a validated questionnaire to screen for ED in IMD patients. This project aims to translate the SCOFF questionnaire for the Portuguese language, including cultural adaptation, and validation in IMD patients that require dietary management. In the first phase of the project, we intend to proceed with the Portuguese translation and cultural adaptation of the SCOFF questionnaire, following the recommended steps by the World Health Organization: “Process of translation and adaptation of instruments”. The final version of the questionnaire will be applied to approximately 30 IMD patients that require dietary treatment and attend to the nutrition appointment in the Reference Center of Centro Hospitalar Universitário do Porto and in the Treatment Centers of Hospital Divino Espírito Santo and Hospital de Santo Espírito da Ilha Terceira, in Azores. In the second phase, we intend to proceed with the statistical validation of the questionnaire. This protocol will be presented to the Ethic Committee of Centro Hospitalar Universitário do Porto, Hospital Divino Espírito Santo and Hospital de Santo Espírito da Ilha Terceira. We expect that this instrument could be validated for this specific group of patients that globally have high risk of developing eating disorders. This tool can identify ED early and allow a rapid initiation of treatment, which will improve the prognosis of IMD patients. It is also expected that, subsequently in the future, this tool could be used to others IMD patients at the Portuguese Reference/Treatment Centers.
Research Team: Inês Curvelo Mendes – Nutritionist; Hospital Divino Espírito Santo EPER., Ponta Delgada, São Miguel, Azores Manuela Ferreira de Almeida – Nutritionist; Centro Hospitalar Universitário do Porto, EPE.; Centro de Genética Médica Doutor Jacinto de Magalhães; Porto, Portugal Sofia Pinto – Nutritionist; Centro Hospitalar Universitário do Porto, EPE.; Porto, Portugal Vânia Magalhães – Nutritionist; Centro Hospitalar Universitário do Porto, EPE.; Porto, Portugal Cláudia Meneses – Nutritionist; Hospital de Santo Espírito da Ilha Terceira, EPER., Angra do Heroísmo, Terceira, Azores Tânia Rocha – Nutritionist; Hospital de Santo Espírito da Ilha Terceira, EPER., Angra do Heroísmo, Terceira, Azores Rita Brotas Carvalho – Nutritionist; Hospital Divino Espírito Santo EPER., Ponta Delgada, São Miguel, Azores
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