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1.
Eur Respir J ; 48(3): 758-67, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-27230437

RESUMO

Real-time medication monitoring (RTMM) is a promising tool for improving adherence to inhaled corticosteroids (ICS), but has not been sufficiently tested in children with asthma. We aimed to study the effects of RTMM with short message service (SMS) reminders on adherence to ICS, asthma control, asthma-specific quality of life and asthma exacerbation rate; and to study the associated cost-effectiveness.In a multicentre, randomised controlled trial, children (aged 4-11 years) using ICS were recruited from five outpatient clinics and were given an RTMM device for 12 months. The intervention group also received tailored SMS reminders, sent only when a dose was at risk of omission. Outcome measures were adherence to ICS (RTMM data), asthma control (childhood asthma control test questionnaire), quality of life (paediatric asthma quality of life questionnaire) and asthma exacerbations. Costs were calculated from a healthcare and societal perspective.We included 209 children. Mean adherence was higher in the intervention group: 69.3% versus 57.3% (difference 12.0%, 95% CI 6.7%-17.7%). No differences were found for asthma control, quality of life or asthma exacerbations. Costs were higher in the intervention group, but this difference was not statistically significant.RTMM with tailored SMS reminders improved adherence to ICS, but not asthma control, quality of life or exacerbations in children using ICS for asthma.


Assuntos
Antiasmáticos/uso terapêutico , Asma/tratamento farmacológico , Monitoramento de Medicamentos/métodos , Adesão à Medicação , Envio de Mensagens de Texto , Administração por Inalação , Corticosteroides/economia , Corticosteroides/uso terapêutico , Antiasmáticos/economia , Asma/economia , Asma/psicologia , Criança , Pré-Escolar , Análise Custo-Benefício , Progressão da Doença , Feminino , Custos de Cuidados de Saúde , Humanos , Masculino , Pacientes Ambulatoriais , Qualidade de Vida , Sistemas de Alerta
2.
Am J Med Genet A ; 170A(4): 1040-5, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26789019

RESUMO

Trisomy 4 mosaicism in liveborns is very rare. We describe a 17-month-old girl with trisomy 4 mosaicism. Clinical findings in this patient are compared to previously reported patients. Based on the few descriptions available in the literature the common phenotype of trisomy 4 mosaicism seems to consist of IUGR, low birth weight/length/OFC, congenital heart defects, characteristic thumb anomalies (aplasia/hypoplasia), skin abnormalities (hypo-/hyperpigmentation), several dysmorphic features, and likely some degree of intellectual disability. When trisomy 4 mosaicism is suspected clinicians should be aware that a normal karyotype in lymphocytes does not exclude mosaicism for trisomy 4. This report contributes to a further delineation of the phenotype associated with trisomy 4 mosaicism.


Assuntos
Cromossomos Humanos Par 4 , Mosaicismo , Fenótipo , Trissomia , Anormalidades Múltiplas/diagnóstico , Anormalidades Múltiplas/genética , Transtornos Cromossômicos/diagnóstico , Transtornos Cromossômicos/genética , Hibridização Genômica Comparativa , Fácies , Feminino , Humanos , Hibridização in Situ Fluorescente , Lactente , Cariótipo
3.
Eur J Clin Pharmacol ; 69(3): 683-90, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-22955894

RESUMO

PURPOSE: To investigate the association of ethnicity with objectively, electronically measured adherence to inhaled corticosteroids (ICS) in a multicultural population of children with asthma in the city of Amsterdam. METHODS: The study was designed as a prospective, observational multicenter study in which adherence to ICS and potential risk factors for adherence to ICS were measured in a cohort of Moroccan and native Dutch children with asthma. Electronic adherence measurements were performed for 3 months per patient using a Real Time Medication Monitoring (RTMM) system. Ethnicity and other potential risk factors, such as socio-economic status, asthma control and parental medication beliefs, were extracted from medical records or parent interviews. The association between adherence and ethnicity was analysed using multivariate linear regression analysis. RESULTS: A total of 90 children (aged 1-11 years) were included in the study and data of 87 children were used for analysis. Average adherence to ICS was 49.3 %. Native Dutch children showed higher adherence to ICS than Moroccan children (55.9 vs. 42.5 %, respectively; p = 0.044, univariate analysis). After correction for confounders (>3 annual visits to the paediatric outpatient clinic, regular use of a spacer during inhalation), the final regression model showed that ethnicity was independently associated with adherence (p = 0.028). CONCLUSIONS: In our Western European population of inner city children with asthma, poor adherence to ICS was a serious problem, and even somewhat more so in ethnic minorities. Paediatricians involved in asthma treatment should be aware of these cultural differences in medication-taking behaviour, but further studies are needed to elucidate the causal mechanism.


Assuntos
Corticosteroides/administração & dosagem , Antiasmáticos/administração & dosagem , Asma/tratamento farmacológico , População Negra/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Adesão à Medicação/etnologia , População Branca/estatística & dados numéricos , Administração por Inalação , Fatores Etários , Asma/etnologia , Criança , Proteção da Criança , Pré-Escolar , Características Culturais , Desenho de Equipamento , Feminino , Humanos , Lactente , Modelos Lineares , Masculino , Inaladores Dosimetrados , Marrocos/epidemiologia , Análise Multivariada , Países Baixos/epidemiologia , Pais/psicologia , Estudos Prospectivos , Fatores de Risco , Fatores Socioeconômicos , Fatores de Tempo , Saúde da População Urbana
4.
BMC Health Serv Res ; 12: 12, 2012 Jan 11.
Artigo em Inglês | MEDLINE | ID: mdl-22236336

RESUMO

BACKGROUND: The health status of chronic sick ethnic minority children in the Netherlands is unequal compared with indigenous Dutch children. In order to optimize the health care for these children a specific patient-oriented clinic in ethnic-cultural diversity: the Mosaic Outpatient Clinic (MOC) was integrated in the general Paediatric Outpatient Departments (POPD) of three hospitals in Amsterdam. METHODS: Feasibility of the MOC, factors influencing the health care process and encountered bottlenecks in health care were studied in ethnic minority children with asthma, diabetes type 1 or metabolic disease originating from Morocco, Turkey and Surinam. Feasibility was determined by the number of patients attended, support from the paediatric medical staff and willingness of the patients to participate. Influences on the health care process comprised parents' level of knowledge of disease, sense of disease severity, level of effort, linguistic skills, health literacy, adherence to treatment and encountered bottlenecks in the health care process. Moreover, the number of admissions and visits to the POPD in the years before, during and after the MOC were analysed. RESULTS: In 2006 a total of 189 ethnic minority children were seen. Integration of the MOC within the general POPD of the hospital is feasible. The ability of the parents to speak and understand Dutch was found to be 58%, functional health literacy was 88%; sufficient knowledge of disease and sense of disease severity were 59% and 67%, respectively. The main bottlenecks in the healthcare process: poor knowledge of disease, limited sense of disease severity and low health literacy in the parents proved to be the best predictors for decreased adherence. After attending the MOC there was a decrease in the number of admissions and visits to the POPD for asthma while the number of visits increased in patients with diabetes and the amount of no-shows decreased in patients with a metabolic disease. CONCLUSION: Integration of a MOC in the general POPD is feasible and appreciated by the parents, provides more insight in the problems ethnic minority children and their parents face and shows promising directions for optimizing adherence in these children.


Assuntos
Diversidade Cultural , Prestação Integrada de Cuidados de Saúde/organização & administração , Grupos Minoritários/estatística & dados numéricos , Ambulatório Hospitalar/organização & administração , Assistência Centrada no Paciente/organização & administração , Pediatria/organização & administração , Adolescente , Asma/etnologia , Asma/terapia , Criança , Pré-Escolar , Doença Crônica , Diabetes Mellitus Tipo 1/etnologia , Diabetes Mellitus Tipo 1/terapia , Estudos de Viabilidade , Pesquisa sobre Serviços de Saúde , Humanos , Lactente , Doenças Metabólicas/etnologia , Doenças Metabólicas/terapia , Marrocos/etnologia , Países Baixos , Suriname/etnologia , Turquia/etnologia
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