RESUMO
BACKGROUND: The environment may affect the course of familial Mediterranean fever (FMF). OBJECTIVE: The objective of this study was to compare disease severity between adult FMF patients in Turkey (TR) and Germany (G). METHODS: Adult FMF patients of Turkish ancestry on colchicine living in Turkey (n = 40) or G (n = 35) were compared. Disease severity, C-reactive protein (CRP), and erythrocyte sedimentation rate were assessed. RESULTS: Groups differed significantly in the following aspects: age at onset of disease (TR: 15.6, G: 10.8 years; P = 0.02), delay between onset and initiation of colchicine treatment (TR: 6.8 years, G: 14.9 years; P < 0.001), female gender (TR: 80%, G: 57.1%; P = 0.04), and duration of disease (TR: 14.4 years, G: 23.4 years; P < 0.001). There was no significant difference in colchicine treatment concerning average dosing and duration of therapy. No significant difference could be found between the 2 groups in CRP and disease severity as assessed by the score of Pras et al. (Am J Med Genet. 1998;75:216-219) even after adjusting for potential confounding variables. Mean erythrocyte sedimentation rate was significantly higher among patients living in G (TR: 13.2 mm/first hour, G: 26.3 mm/first hour; P < 0.001). Among patients living in Germany, there was a significant difference in age at FMF onset depending on their country of birth (born in TR: 14.9 years, born in G: 6.9 years; P = 0.0001). CONCLUSIONS: In adult FMF patients living in Turkey or Germany, no difference in disease activity or CRP could be found. German patients were younger at onset of disease and had a longer delay between onset and initiation of colchicine treatment.
Assuntos
Febre Familiar do Mediterrâneo/etnologia , Adolescente , Adulto , Idade de Início , Sedimentação Sanguínea , Proteína C-Reativa/metabolismo , Criança , Colchicina/uso terapêutico , Febre Familiar do Mediterrâneo/tratamento farmacológico , Febre Familiar do Mediterrâneo/epidemiologia , Feminino , Alemanha/etnologia , Supressores da Gota/uso terapêutico , Humanos , Modelos Lineares , Masculino , Índice de Gravidade de Doença , Fatores Sexuais , Fatores de Tempo , Turquia/epidemiologia , Turquia/etnologiaRESUMO
BACKGROUND: Today more than two million people with Turkish migration background live in Germany making them the largest ethnic minority in the country. Data concerning language skills and the perception of medical information in hospitalised patients with Turkish migration background (T) are scarce. Our study is the first to gather quantitative information on this important subject. METHODS: T and hospitalised German patients without migration background (G) of our university hospital were prospectively included into a cross-sectional study and completed a questionnaire - each group in the appropriate language (T: Turkish, G: German). RESULTS: 121 T and 121 G were included. Groups significantly differed in age (T: 44.9 ± 17.8, G: 56.9 ± 16.7y) and proportion of males (T: 37.2, G: 54.5%) but not regarding the proportion of college graduates (T: 19.3, G: 15.7%). The majority of T was born in Turkey (71%) and is of Turkish nationality (66%). 74% of T speak mainly Turkish at home; however, 73% speak German at work. 74.4% of T self-rated their German linguistic proficiency as "average" or better while 25.6% reported it as "very bad" or "bad". 10.7% of T need translation in order to pursue everyday activities. T were significantly less satisfied with the physician's information on disease and estimated to understand significantly less of what the physician told them: 46.3% of T estimated their reception of the physician's information to be "average" or worse. 43.3% of T had the impression that it would have helped them "much" or "very much" to be aided by an interpreter at the hospital. The information transmitted while giving informed consent to invasive medical procedure was judged to be "mostly" or "completely" sufficient by the majority of T (76%) and G (89.8%). In this setting 37 of 96 T (38.5%) reported being helped by an interpreter - in most cases (64.9%) a family member. CONCLUSION: Although the majority of patients with Turkish migration background have spent most of their lives in Germany (28.94 ± 10.41y) a large part of this population has limited German language skills and difficulties obtaining medical information when hospitalised.
Assuntos
Barreiras de Comunicação , Compreensão , Pacientes Internados/psicologia , Educação de Pacientes como Assunto , Adulto , Estudos Transversais , Emigrantes e Imigrantes/psicologia , Feminino , Alemanha , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Inquéritos e Questionários , Tradução , Turquia/etnologiaRESUMO
We assessed quality of life (QOL) and disease activity in patients with Familial Mediterranean fever (FMF) of Turkish ancestry living in Germany or Turkey and conducted a correlation with FMF disease activity. 40 FMF patients in Turkey (TR), 40 FMF patients in Germany (G) and 40 healthy controls in Germany (C) were included. QOL was evaluated with the short form of the World Health Organisation Quality of Life scale (WHOQOL-BREF). FMF disease activity was examined with the Pras score. Mean age was TR 30.5 ± 10.6, G 35.2 ± 10.2, C 34.6 ± 10.7. Of the 120 participants, 77 were female. FMF patients in TR and G had a significantly decreased QOL physical health domain compared to controls (TR 59.7 ± 18.8, G 60.4 ± 19.4, C 76.5 ± 14.6). Turkish FMF patients had a lower QOL environment domain compared to controls (TR 62.3 ± 17.5, G 69.7 ± 16.5, C 72.3 ± 13.5). In the other QOL domains, no significant differences were found. The differences in QOL were robust to a regression analysis. No significant correlation between QOL and FMF disease activity was found. German FMF patients had longer duration of disease, younger age at onset and longer delay from disease onset to colchicine treatment. A total of 5 of 40 German FMF patients were not taking colchicine (TR:0). Erythrocyte sedimentation rate was lowest in TR with significant difference between TR and G as well as G and C (TR 13.2 ± 10.3, G 27.8 ± 19.4, C 16.3 ± 12.8 mm/h). C-reactive protein did not differ between TR and G. FMF has an important impact on QOL physical health domain. No correlation between FMF disease activity and the WHOQOL-BREF could be found.