Dornase alfa improves the health‐related quality of life among Brazilian patients with cystic fibrosis—A one‐year prospective study

Rozov, Tatiana; Oliveira, Viviane Ziebell de; Santana, Maria Angélica; Adde, Fabíola Villac; Mendes, Rita; Paschoal, Ilma Aparecida; Reis, Francisco José Caldeira; Higa, Laurinda Yoko Shinzato; Toledo, Antonio; Pahl, M M C

doi:10.1002/ppul.21267

Cited by 18 publications

(36 citation statements)

References 35 publications

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“…(5,7,12) In addition, it provides information for economic planning and makes it possible to determine the impact of new treatments, as shown in a recent study. (30) Patients between 6 and 14 years of age have a satisfactory QoL in all domains, whereas adolescents and adults report dissatisfaction with the treatment. We consider the use of QoL questionnaires to be a low-cost, user-friendly method.…”

Section: Discussionmentioning

confidence: 99%

Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

Cohen

Ribeiro

et al. 2011

J. bras. pneumol.

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Objective: To assess the quality of life (QoL) of patients with cystic fibrosis (CF) followed at a university referral center for CF. Methods: A cross-sectional study involving application of the Cystic Fibrosis Questionnaire (CFQ) and Shwachman score in CF patients between April of 2008 and June of 2009. Results: The sample consisted of 75 patients. The mean age was 12.5 ± 5.1 years (range, 6.1-26.4 years). The patients were divided into three groups by age in years: group I (< 12), , and III (≥ 14). The highest and lowest CFQ scores were for the nutrition domain in group III (89.3 ± 16.2) and the social domain in group II (59.5 ± 22.3), respectively. Groups I and III differed significantly regarding the treatment domain (p = 0.001). Regarding Shwachman scores, there were significant differences between patients scoring ≤ 70 and those scoring > 70 in the social (group I; p = 0.045), respiratory (group II; p = 0.053), and digestive (p = 0.042) domains. In group III, severity did not correlate with QoL. In groups I and II, patients with an FEV 1 < 80% of predicted did not differ from other patients for any CFQ domain. However, in group III, values for the following domains were significantly lower in patients with an Resultados:Participaram 75 pacientes, com média de idade de 12,5 ± 5,1 anos (variação: 6,1-26,4 anos). Os pacientes foram divididos em três grupos de acordo com a idade: grupo I (< 12 anos), II (12-14 anos) e III (≥ 14 anos). As pontuações mais altas e mais baixas no CFQ foram para o domínio alimentação do grupo III (89,3 ± 16,2) e para o domínio social no grupo II (59,5 ± 22,3), respectivamente. Houve uma diferença significativa no domínio tratamento entre os grupos III e I (p = 0,001). Pacientes com escore de Shwachman ≤ 70 apresentaram diferenças significativas em relação aos domínios social (grupo I; p = 0,045), respiratório (grupo II; p = 0,053) e digestivo (p = 0,042) quando comparados aqueles com escores > 70. No grupo III, não se observou associação entre gravidade e QV. Nos grupos I e II, não se observou diferenças entre os pacientes com VEF 1 < 80% do previsto e os demais pacientes em todos os domínios do CFQ. Entretanto, no grupo III, as médias dos pacientes com VEF 1 < 80% do previsto foram significativamente menores nos domínios físico (p = 0,012), imagem corporal (p = 0,031), respiratório (p = 0,023), emocional (p = 0,041) e papel social (p = 0,024). Conclusões: A avaliação da QV em pacientes com FC é importante, pois contribui para uma melhor aderência ao tratamento.Descritores: Fibrose cística; Qualidade de vida; Questionários.

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Section: Discussionmentioning

confidence: 99%

Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

Cohen

Ribeiro

et al. 2011

J. bras. pneumol.

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“…[75][76][77][78][79][80][81] Dornase alfa has been shown to have positive effects on CT changes and LCI [82][83][84] and improved health-related quality-of-life scores in children >6 years. 85 Safety and tolerability of dornase alfa has been demonstrated in children ages 3 months to 5 years. 86,87 Potential benefits include its effect on mucous plugging, air trapping, and lung health in CF that may result in delayed pulmonary disease progression.…”

Section: Dornase Alfamentioning

confidence: 99%

Clinical Practice Guidelines From the Cystic Fibrosis Foundation for Preschoolers With Cystic Fibrosis

et al. 2016

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Cystic fibrosis (CF) clinical care guidelines exist for the care of infants up to age 2 years and for individuals ≥6 years of age. An important gap exists for preschool children between the ages of 2 and 5 years. This period marks a time of growth and development that is critical to achieve optimal nutritional status and maintain lung health. Given that disease often progresses in a clinically silent manner, objective and sensitive tools that detect and track early disease are important in this age group. Several challenges exist that may impede the delivery of care for these children, including adherence to therapies. A multidisciplinary committee was convened by the CF Foundation to develop comprehensive evidence-based and consensus recommendations for the care of preschool children, ages 2 to 5 years, with CF. This document includes recommendations in the following areas: routine surveillance for pulmonary disease, therapeutics, and nutritional and gastrointestinal care.

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“…Temos indagações ruins relacionadas à doença, embora a esperança esteja ainda presente. Um estudo realizado no Brasil mostrou que novos tratamentos podem melhorar a qualidade de vida e a expectativa de vida dos pacientes com FC e, consequentemente, a sua visão sobre a doença nas esferas emocionais e sociais (Rozov et al, 2010).…”

Section: Discussionunclassified

Viver Com Fibrose Cística: A Visão Pessoal Do Adolescente Brasileiro

et al. 2016

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RESUMO.O presente estudo examinou os desafios psicológicos de adolescentes com fibrose cística (FC) no Brasil, por meio de uma entrevista semiestruturada com perguntas abertas : [(i) Como é ter FC para você?; (ii) Você tem necessidades especiais por ter FC?; (iii) Como você vê o seu futuro?] Foi realizada a entrevista com 42 adolescentes com FC. Foi investigado como os adolescentes lidam com a FC, identificado suas necessidades, e como eles vislumbram o futuro. Os resultados mostram que as emoções dos adolescentes incluíam medo da morte, vergonha e raiva. Outras preocupações incluíam a perda da liberdade, ficando com atraso na escola, perda de amigos, da igualdade e aceitação, e as perspectivas futuras. Esses sentimentos e preocupações foram influenciados pela doença. Há poucos estudos que examinaram ajuste dos adolescentes ao convívio com a FC na América do Sul. Assim, buscamos compreender como é viver com uma doença crônica na adolescência; como isso pode contribuir para novas intervenções psicológicas para pacientes e familiares; estimular novas pesquisas, e auxiliar os profissionais de saúde nos cuidados específicos aos adolescentes com FC. Palavras-chave: Doenças crônicas; fibrose cística; emoções. LIVING WITH CYSTIC FIBROSIS: THE PERSONAL BRAZILIAN ADOLESCENT VIEWABSTRACT. The present study examined the psychological challenges of adolescents with cystic fibrosis (CF) in Brazil. A semi-structured interview with open-ended questions [(i) What is it like for you to have CF?; (ii) Do you have any special needs because you have CF? (iii) How do you envision your future?] was conducted with 42 CF adolescents' patients. We investigated how adolescents faces CF, identif ied their needs, and how they envision the future. The results show that the adolescents' emotions included fear of death, embarrassment, and anger. Other concerns included the loss of freedom, falling behind at school, a loss of friends, equality and acceptance, and the future perspectives. These feelings and concerns were influenced by the disease and may affect coping with CF. Few studies have examined adolescents' adjustment to living with CF in South America; understanding how to live with CF in adoles cence contributes to new psychological interventions for patients and families, stimulate new research, and assist healthcare professionals and others who work and care specific to CF adolescents.

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Dornase alfa improves the health‐related quality of life among Brazilian patients with cystic fibrosis—A one‐year prospective study

Abstract: The introduction of dornase alfa improved the HRQL of the patients with CF during the first year of treatment.

Cited by 18 publications

References 35 publications

Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

Clinical Practice Guidelines From the Cystic Fibrosis Foundation for Preschoolers With Cystic Fibrosis

Viver Com Fibrose Cística: A Visão Pessoal Do Adolescente Brasileiro

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