PERCEPTIONS OF CAREGIVERS OF PATIENTS WITH COW’S MILK ALLERGY REGARDING THE TREATMENT

The aim of this qualitative study was to understand the perceptions of caregivers of children and adolescents with cow’s milk allergy regarding the disease and its treatment. Nine caregivers were interviewed and content analysis method was used. Three categories with subcategories emerged: treatment and education of the patient and their caregivers (life experiences, bases of treatment, coping with the disease), resolution of the disease (hope, gradual  improvement), quality of life (social inclusion, family daily activities, costs of dietary treatment). Caregivers experienced difficulties during the initial treatment but pointed out that the guidance given during follow-up made the adjustments easier. Family members commented on the difficulties about lack of cooperation fromother family members regarding the restrictive diet, their experience coping with the allergic reaction,doubts about the treatment and gaps on knowledge about the disease by other physicians andpeople. Some of them believed that there is no treatment for the disease, because there are nodrugs or vaccines, but they were waiting for cure. The majority of relatives were satisfied with the gradual improvement of patients observed by reduction on the severity of symptoms and tolerance of milk traces within foods. In addition, they commented on the efforts to give a normal life for their children, the changes in their daily lives and the difficulty to buy special products. Concluding,caregivers of children and adolescents with cow’s milk allergy feel a great burden of the disease.Este estudo qualitativo teve como objetivo compreender as percepções de familiares de crianças eadolescentes com alergia à proteína do leite de vaca (APLV) em relação à doença e seu tratamento.Foram realizadas nove entrevistas e foi utilizado o método de análise de conteúdo. Surgiram trêscategorias com subcategorias: tratamento e educação do paciente e familiares (experiências vividas,base do tratamento e como lidar com a doença), resolução da doença (expectativa e melhoragradativa), qualidade de vida (inclusão social, cotidiano familiar e custo dos alimentos). Os familiaresvivenciaram dificuldades durante o início do tratamento, mas revelaram que as orientações fornecidasno seguimento tornaram as adaptações à doença mais fáceis. Comentaram sobre as dificuldades emobter a colaboração de outros membros da família em relação à dieta de exclusão, suas experiênciasfrente a uma reação alérgica, dúvidas quanto ao tratamento e lacunas do conhecimento sobre adoença entre outros médicos e na população em geral. Alguns deles acreditavam que não haviatratamento para a APLV, porque não existiam medicamentos ou vacinas, mas mantinham a esperançada descoberta de uma cura. A maioria dos familiares estava satisfeita com a melhora gradativa dosseus filhos, percebida pela redução da gravidade dos sintomas e tolerância a traços de leite. Tambémcomentaram sobre os esforços em proporcionar uma vida normal para seus filhos, as mudanças emsuas vidas e a dificuldade em comprar alimentos especiais. Em conclusão, os familiares de criançase adolescentes com APLV sentem grande impacto da doença

Perceptions of caregivers of patients with cow\'s milk allergy regarding the treatment

Introdução: Estudos demonstram que as alergias alimentares influenciam negativamente a qualidade de vida dos pacientes e familiares. Embora este tema seja importante, ainda há poucos estudos na literatura internacional e não existe estudos nacionais qualitativos em alergia alimentar. Objetivos: Compreender as percepções de familiares de crianças e adolescentes com alergia às proteínas do leite de vaca em relação à doença e seu tratamento. Trajetória Metodológica: Trata-se de um estudo qualitativo, em que foram entrevistados os familiares diretamente responsáveis pelos cuidados de crianças e adolescentes com alergia à proteína do leite de vaca confirmada, acompanhados no ambulatório de alergia alimentar da Unidade de Alergia e Imunologia do Instituto da Criança do Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo há, pelo menos, um ano. As entrevistas foram realizadas em condições de privacidade e foram propostas duas questões: \"Fale sobre a sua experiência com o tratamento da alergia à proteína do leite de vaca\" e \"O que o(a) Sr(a) espera do tratamento da doença do seu(sua) filho(a)?\". Os dados foram gravados, transcritos, avaliados utilizando-se o método de análise de conteúdo, sendo constituídas categorias e subcategorias a partir dos discursos. Resultados: Foram realizadas nove entrevistas, a maioria com mães dos pacientes. Surgiram três categorias com subcategorias: A. Tratamento e educação do paciente e familiares (experiências vividas, base do tratamento e como lidar com a doença), B. Resolução da doença (expectativa e melhora gradativa), C. Qualidade de vida (inclusão social, cotidiano familiar e custo dos alimentos). Os familiares vivenciaram dificuldades durante o início do tratamento, mas revelaram que as orientações fornecidas no seguimento tornaram as adaptações à doença mais fáceis. Eles também compararam a alergia à proteína do leite de vaca com outras doenças crônicas e destacaram a importância do acompanhamento de seus filhos na instituição para realizar um controle adequado. Além disso, enfatizaram que o seguimento também é importante para os profissionais de saúde, que aprimoram os conhecimentos sobre a doença. Os familiares comentaram sobre as dificuldades em obter a colaboração de outros membros da família em relação à dieta de exclusão, suas experiências frente a uma reação alérgica, dúvidas quanto ao tratamento e lacunas do conhecimento sobre a doença entre outros médicos e na população em geral. Alguns deles acreditavam que não havia tratamento para a alergia à proteína do leite de vaca, porque não existiam medicamentos ou vacinas, mas mantinham a esperança da descoberta de uma cura. A maioria dos familiares estava satisfeita com a melhora gradativa dos seus filhos, a qual era percebida pela redução da gravidade dos sintomas e tolerância a traços de leite. Além disso, eles comentaram sobre os esforços em proporcionar uma vida normal para seus filhos, as mudanças em suas vidas e a dificuldade em comprar alimentos especiais. Conclusão: O estudo qualitativo permitiu entender como os familiares enfrentam a doença, suas histórias e as expectativas quanto ao tratamento. Os familiares de crianças e adolescentes com alergia à proteína do leite de vaca sentem um grande impacto da doença e necessitam de apoio e orientação dos profissionais de saúdeIntroduction: Some studies have shown that food allergies negatively influence on patient\'s and caregivers\' quality of life. Although this theme is important, there aren\'t many studies in the international literature and there is no national qualitative study in food allergy. Objectives: To understand the perceptions of caregivers of patients with cow\'s milk allergy regarding the disease and its treatment. Methods: Qualitative study in which caregivers of children and adolescents with confirmed cow\'s milk allergy followed, at least, for one year, were interviewed. They were recruited from the outpatient clinic of the Allergy and Immunology Division from Instituto da Criança do Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo. The interviews were conducted under conditions of privacy and two opened questions were proposed: \"Tell me about your experience with cow\'s milk allergy treatment\" and \"What do you expect from your child\'s disease treatment?\". Data were audio-recorded, transcribed, analyzed using the content analysis method and categories and subcategories were generated based on their speeches. Results: Nine interviews were done, mostly with mothers of the patients. Three categories with subcategories emerged: A. Treatment and education of the patient and their caregivers (life experiences, bases of treatment, coping with the disease), B. Resolution of the disease (hope, gradual improvement), C. Quality of life (social inclusion, family daily activities, costs of dietary treatment). Caregivers experienced difficulties during the initial treatment but pointed out that the guidance given during follow-up made the adjustments easier. They also compared the cow\'s milk allergy with other chronic diseases and highlighted the importance of their children follow-up in this institution for adequate control of them. Moreover, they emphasized that the follow-up is also important for medical staff, for knowledge improvement about the disease. Family members commented on the difficulties about lack of cooperation from other family members regarding the restrictive diet, their experience coping with the allergic reaction, doubts about the treatment and gaps on knowledge about the disease by other physicians and people. Some of them believed that there is no treatment for the disease, because there are no drugs or vaccines, but they were waiting for cure. The majority of relatives were satisfied with the gradual improvement of patients observed by reduction on the severity of symptoms and tolerance of milk traces within foods. In addition, they commented on the efforts to give a normal life for their children, the changes in their daily lives and the difficulty to buy special products. Conclusion: This qualitative study allowed us to understand how families cope with the disease, their histories and expectations about the treatment. The relatives of children and adolescents with cow\'s milk allergy feel a great burden of the disease and need support and orientation from health professional

Rate and determinants of non-adherence to a gluten-free diet and nutritional status assessment in children and adolescents with celiac disease in a tertiary Brazilian referral center: a cross-sectional and retrospective study

Abstract Background Compliance with a gluten-free diet (GFD) is difficult at all ages but particularly for teenagers due to social, cultural, economic, and practical pressures. The multidisciplinary team responsible for the treatment of patients with celiac disease and give support to their parents plays a special role on strengthening GFD and assessing the nutritional and physical health. Methods A cross-sectional and retrospective study including patients under 20 years of age, with biopsy-confirmed CD, followed regularly at the Department of Pediatrics, Division of Gastroenterology, Hospital das Clínicas, University of Sao Paulo, School of Medicine, Sao Paulo, Brazil, were surveyed using a questionnaire and serologic test applied between November 2011 and February 2012. A retrospective chart review of these patients was performed to collect the anthropometric data along with the results of the serologic test performed at the time of diagnosis and after at least 1 year of treatment with a GFD. Results We evaluated 35 patients aged between 2.4 and 19.9 years. Of these 68.6% were female, 88.6% had the typical form of the disease and 51.4% had other comorbidities. The mean age at diagnosis was 5.4 years. Despite dietary guidance, 20% reported non-adherence to the diet. Most children recovered the weight and height deficit after 5 years of treatment, and in some children, excessive weight gain became a concern. Conclusion The majority of transgressions occurred intentionally at home or at parties. There was a risk of excessive weight gain, especially in the first two years of treatment. More alternatives and easier access to low cost gluten-free foods, increasing the discussion about the benefits of adhering to a GFD among patients, families, and the general population, besides the acquisition of self-management skills, are crucial to fostering independent children and adolescents who have the knowledge and tools to manage life with CD

Correction to: Rate and determinants of non-adherence to a gluten-free diet and nutritional status assessment in children and adolescents with celiac disease in a tertiary Brazilian referral center: a cross-sectional and retrospective study

Correction Unfortunately, after publication of this article [1], it was noticed that the names of the second and third authors were incorrectly displayed, respectively, as Glauce Hiromi Yonaminez and Carla Aline Satiro. The correct names are Glauce Hiromi Yonamine and Carla Aline Fernandes Satiro and can be seen in the corrected author list above. The original article has also been updated to correct this error

IgE-mediated cow’s milk allergy in Brazilian children: Outcomes of oral food challenge

Background: Oral food challenge (OFC) is useful for diagnosing food allergies and assessing tolerance, but severe reactions may occur during the procedure. Objective: To characterize the frequency and severity of reactions during cow's milk (CM) OFCs. Methods: A cross-sectional study was conducted to analyze the outcome of cow's milk oral food challenges (CMOFCs) performed to confirm IgE-mediated CM allergy or to assess food tolerance. CM was given first as baked milk (BM), followed by whole CM if there was no prior reaction to BM. An OFC was considered positive if IgE-mediated symptoms developed up to 2 h after ingestion. Symptoms were described and variables including age at OFC, prior anaphylaxis, other atopic diseases, and skin test results were compared according to the OFC outcomes. Results: A total of 266 CMOFCs were performed, including 159 patients with a median age of 6.3 years old. One hundred thirty-six tests were positive and 62 resulted in anaphylaxis. Thirty-nine anaphylactic reactions were observed up to 30 min after the first dose. Severe anaphylaxis (cardiovascular and/or neurological involvement) was reported in 5 tests. A second dose of epinephrine was required in 3 tests, and 1 presented a biphasic response. Younger patients had a higher risk of anaphylaxis during baked milk oral food challenge (BMOFC) (p = 0.009). The frequency of anaphylaxis was higher in patients submitted to BM (p = 0.009). Conclusions: Anaphylaxis is a known complication of CMOFCs even when there is no prior anaphylaxis or when conducted with baked products. This study reinforces the importance of conducting OFC in appropriate settings with a well-trained team