Care provided by nurses to patients with juvenile systemic lupus erythematosus.

OBJECTIVES: To describe the care provided by Brazilian nurses to patients with Juvenile Systemic Lupus Erythematosus (JSLE) using a self-administered questionnaire and to evaluate the possible association of demographic data and knowledge of the disease with availability of tools for diagnosis and treatment in Brazilian pediatric services. METHOD: This is a cross-sectional observational descriptive study that analyzed the care provided by Brazilian nurses to patients with JSLE based on the answers to a self-administered questionnaire. Questions included demographics of professionals, nursing consultation, usage of tools to assess disease activity, diagnostic criteria, general care, available practices, transition program, and practices needed for better care. RESULTS: A total of 111/373 (29.4%) questionnaires were completed, most professionals were female (90.1%). Hospitalization (45.9%) and poor medication adherence (27.9%) were the most reported problems, and lack of knowledge about the institutional transition process to adult care was mentioned by half of the professionals (50.5%). Comparisons of professionals on expected care of patients regarding the type of service, hospitalized patient care, and care provided to patients with JSLE did not reveal statistically significant differences (p > 0.05). Nurses who care for patients with JSLE are more likely to work in a public setting (14.5% vs. 36.8%, p = 0.048) and less likely to verify vaccination records (0.12.9% vs. 36.8%, p = 0.038). Nurses who worked in the inpatient setting with patients with JSLE were less likely to address pain concerns (11.7% vs. 61.6%, p < 0.0001) compared to nurses who didn't work with JSLE patients. However, they were more likely to discuss sunscreen use (54.9% vs. 25%, p < 0.05) and be part of a multi-disciplinary team (84.3 vs. 50%, p < 0.0001). CONCLUSIONS: This study demonstrates that the care provided by nurses to patients with JSLE does not consider all the resources available to assess the disease and occurs differently in the inpatient versus outpatient settings. Future research should address this gap in care. Lack of JSLE awareness was commonly reported among professionals, confirming the need for greater knowledge about JSLE, its treatment, and ways to improve adherence.

Impact of wearing fixed orthodontic appliances on quality of life among adolescents: Case-control study.

OBJECTIVE: To investigate the impact of wearing a fixed orthodontic appliance on oral health-related quality of life (OHRQoL) among adolescents. MATERIALS AND METHODS: A case-control study (1 ∶ 2) was carried out with a population-based randomized sample of 327 adolescents aged 11 to 14 years enrolled at public and private schools in the City of Brumadinho, southeast of Brazil. The case group (n  =  109) was made up of adolescents with a high negative impact on OHRQoL, and the control group (n  =  218) was made up of adolescents with a low negative impact. The outcome variable was the impact on OHRQoL measured by the Brazilian version of the Child Perceptions Questionnaire (CPQ 11-14) - Impact Short Form (ISF:16). The main independent variable was wearing fixed orthodontic appliances. Malocclusion and the type of school were identified as possible confounding variables. Bivariate and multiple conditional logistic regressions were employed in the statistical analysis. RESULTS: A multiple conditional logistic regression model demonstrated that adolescents wearing fixed orthodontic appliances had a 4.88-fold greater chance of presenting high negative impact on OHRQoL (95% CI: 2.93-8.13; P < .001) than those who did not wear fixed orthodontic appliances. A bivariate conditional logistic regression demonstrated that malocclusion was significantly associated with OHRQoL (P  =  .017), whereas no statistically significant association was found between the type of school and OHRQoL (P  =  .108). CONCLUSIONS: Adolescents who wore fixed orthodontic appliances had a greater chance of reporting a negative impact on OHRQoL than those who did not wear such appliances.