Background: Diabetes is a common disease in pediatric populations. Family functioning has been related to child adaptation to diabetes. Purpose: To determine the impact of family factors on diabetes,...

Non-classical congenital adrenal hyperplasia (NC-CAH) is a chronic disease characterised by excessive androgen production that may negatively affect the quality of life (QoL) of affected patients. Pediatric Quality of Life Inventory 4.0 (PedsQL™) is a validated tool to assess health-related QoL (HRQoL). A cross-sectional study including 19 patients with NC-CAH was carried out in the pediatric endocrinology department. NC-CAH patients who agreed to participate were included. Anthropometric data was collected. PedsQL™ was applied to the patients and their parents. Patients were divided into four groups according to age: 2-4, 5-7, 8-12, and 13-18 years old. The control group consisted of healthy individuals from the instrument's validation studies for the Portuguese population and the standard control population used in the PedsQL™ validation study. The only difference found concerns the parents' score results for children aged 8-12, which showed physical health and emotional dimension scores significantly higher (86.16±9.86 vs. 68.90±23.02 p=0.004, 69.17±14.14 vs. 65.82±19.24 p=0.004), while psychosocial health's score and total scale score were significantly lower than the control group (59.99±9.90 vs. 69.34±14.07 p=0.047, 73.11±4.65 vs. 78.86±16.61 p=0.017). HRQoL scores are not negatively affected by NC-CAH in most group ages, with the exception of the parents' reports on HRQoL for children aged 8-12. Further studies with a greater number of patients are needed to determine the impact of this chronic disease on the HRQoL of children.

O presente estudo descreve a adaptação para uma amostra portuguesa da Escala de Auto-Eficácia relativa à Diabetes (SEDS) – (Grossnman, Brink & Hauser,1987). Esta escala está baseada na teoria da auto-eficácia de Bandura e pretende avaliar as percepções pessoais relativas à competência, capacidades e meios para os adolescentes lidarem adequadamente com a diabetes. A amostra do nosso estudo é composta por 175 adolescentes provenientes do Serviço de Endocrinologia do Hospital S. João, no Porto. A escala composta por 35 itens agrupados em 3 sub-escalas foi submetida a uma análise das suas propriedades psicométricas na amostra portuguesa seguindo uma metodologia semelhante aos autores originais.A versão portuguesa apresenta um alfa global de 0.90. Os alfas para as sub escalas: auto-eficácia em situações médicas, auto-eficácia em situações gerais e auto-eficácia face ao tratamento da Diabetes são respectivamente de: .62., .63 e .87. A versão final da escala ficou reduzida a 30 itens. Os itens estão agrupados em 3 componentes tal como na versão original: auto-eficácia relativa ao tratamento, auto-eficácia social, e confiança.

Introduction: Children/adolescents with cystic fibrosis (CF) have psychological and physical difficulties that have a severe impact on their health-related quality of life (HRQoL). Aim: To evaluate the impact of CF on HRQoL in a pediatric age sample by identifying major determinants and comparing the HRQoL reports of children and their parents. Methods: A sample of 27 children/adolescents was included in a cross-sectional observational study. Inclusion criteria were age between 4 and 18 years, diagnosis of CF, and the attendance of a caregiver in patients younger than 14 years. A questionnaire was applied to assess sociodemographic data and nutritional status. HRQoL was evaluated using the Portuguese revised version of the CF questionnaire (CFQ-R). Spearman correlations were calculated to analyze the agreement between children's and parents' reports. Spearman correlations and Mann–Whitney U tests were performed to identify associations between HRQoL domains and determinants. Results: The scores of CFQ-R domains were high, with the lowest median value being 66.67. It was found positive moderate associations between children's and parents' reports in 3 domains (P < .05): eating disturbances, body image, and respiratory symptoms. The median scores were similar in the eating disturbances (approximately 80.00) and in the respiratory symptoms (83.33). However, there is a consistent difference of 14.07 in the body image domain. Current age, physical activity, and iron were positively associated with HRQoL, whereas age at diagnosis was negatively associated. Conclusion: These findings reinforce the importance to evaluate HRQoL during childhood and adolescence and to invest in this public health theme.

A Diabetes é uma doença crónica com um grande impacto na vida dos adolescentes. A literatura publicada nos últimos anos tem demonstrado a importância dos factores psicológicos e psicossociais na adesão ao tratamento e controlo metabólico. No entanto, são escassos no nosso país estudos que articulem as variáveis familiares (ambiente familiar, suporte social) com variáveis psicológicas (ansiedade face à doença, crenças de auto-eficácia face ao tratamento) com a adesão, o controlo metabólico e a qualidade de vida. O presente estudo, realizado com 157 adolescentes, utentes da consulta de Diabetologia Pediátrica da UAG da Mulher e da Criança do Hospital de S. João, mostra que os aspectos sócio-familiares (nomeadamente o suporte social familiar e o nível de conflito no ambiente familiar) exercem uma poderosa influência no comportamento de adesão ao tratamento e na qualidade de vida do adolescente, nas variáveis psicológicas, nomeadamente na percepção de barreiras ao tratamento, no stress face à doença e na percepção de auto-eficácia.