17 research outputs found

    Protocol for the EARCO Registry : a pan-European observational study in patients with α1-antitrypsin deficiency

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    Rationale and objectives Alpha-1 antitrypsin deficiency (AATD) is a genetic condition that leads to an increased risk of emphysema and liver disease. Despite extensive investigation, there remain unanswered questions concerning the natural history, pathophysiology, genetics and the prognosis of the lung disease in association with AATD. The European Alpha-1 Clinical Research Collaboration (EARCO) is designed to bring together researchers from European countries and to create a standardised database for the follow-up of patients with AATD. Study design and population The EARCO Registry is a non-interventional, multicentre, pan-European, longitudinal observational cohort study enrolling patients with AATD. Data will be collected prospectively without interference/modification of patient's management by the study team. The major inclusion criterion is diagnosed severe AATD, defined by an AAT serum level <11 µM (50 mg·dL−1) and/or a proteinase inhibitor genotype ZZ, SZ or compound heterozygotes or homozygotes of other rare deficient variants. Assessments at baseline and during the yearly follow-up visits include lung function testing (spirometry, body plethysmography and diffusing capacity of the lung), exercise capacity, blood tests and questionnaires (symptoms, quality of life and physical activity). To ensure correct data collection, there will be designated investigator staff to document the data in the case report form. All data will be reviewed by the EARCO database manager. Summary The EARCO Registry aims to understand the natural history and prognosis of AATD better with the goal to create and validate prognostic tools to support medical decision-making

    ARIA (Allergic rhinitis and its impact on asthma) Achievements in 10 years and future needs

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    Allerjik rinit ve astım tüm yaş grupları için küresel sağlık sorunlarıdır. Astım ve rinit sıklıkla bir arada bulunur. Allerjjik rinit ve astım üzerine etkisi (ARIA), Dünya Sağlık Örgütünün 1999 yılındaki bir çalıştayında başlatılmış ve 2001 yılında yayınlanmış- tır. ARIA, allerjik riniti hafif/orta-ağır ve intermittan/persistan olarak yeniden sınıflandırmıştır. Bu sınıflandırma allerjik rinitin hastalar üzerindeki etkisini daha yakın yansıtmaktadır. 2010 yılı revizyonunda ARIA, allerjik rinit/astım birlikteliğinin yönetiminde, GRADE [Grading of Recommendation, Assessment, Development and Evaluation (Önerme, Saptama, Geliştirme ve De- ğerlendirme Derecelendirmesi)] sistemine dayanan klinik ve pratik bir rehber geliştirmiştir. ARIA dünyada 50 nin üzerinde ülkeye yayılmış ve yürütülmektedir. Türkiye de de ARIA kazanımlarını raporlamak ve klinik, araştırma ve yürütmede halen var olan gereksinimleri belirlemek, 2011 Avrupa Birliği Çocuk Astım ve Allerji Önceliklerini güçlendirmek adına çok önemlidir.Allergic rhinitis and asthma represent global health problems for all age groups. Asthma and rhinitis frequently co-exist in the same subjects. Allergic Rhinitis and its Impact on Asthma (ARIA) was initiated during a World Health Organization (WHO) workshop in 1999 and was published in 2001. ARIA has reclassified allergic rhinitis as mild/moderate-severe and intermittent/persistent. This classification schema closely reflects the impact of allergic rhinitis on patients. In its 2010 Revision, ARIA developed clinical practice guidelines for the management of allergic rhinitis and asthma co-morbidities based on GRADE (Grading of Recommendation, Assessment, Development and Evaluation). ARIA has been disseminated and implemented in over 50 countries of the world. In Turkey, it is important to make a record of ARIA achievements and to identify the still unmet clinical, research and implementation needs in order to strengthen the 2011 EU Priority on allergy and asthma in children

    Evaluation of physians, patients, relatives and society of opinions on the told lung cancer diagnosis [Hekimlerin, hasta yakınlarının ve toplumun akciğer kanseri tanısının söylenmesine ilişkin görüşlerinin değerlendirilmesi]

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    Introduction: In our country, this is usually done by patient relatives. In this study, we aimed to investigate the thought of doctors who done the diagnosis, doctors who arrange the treatment, first degree relatives of patients with lung cancer, and population as a control. Materials and Methods: 310 subjects (100 doctors, 110 first degree realtives of patients, and 100 subjects as a control) were included to the study. The mean age was 39.77 ± 11.44 years and there was 170 females. 46% of doctors were giving cancer treatment (chemotheraphy/radiotheraphy). Results: 84.5% of subjects were answered the question (Do you want to know the diagnosis of lung cancer if you are lung cancer?) as "yes" and the answers were not different between groups (p> 0.05). 72 of doctors were giving information about diagnosis of patients. This ratio was 89.1% in doctors who arrange lung cancer treatment whereas it was 57.4% in doctors who do not arrange cancer treatment. The percent age of learning of diagnosis of lung cancer throughout the time in doctors, population, and patient's relatives were 19%, 34%, and 59% respectively (p< 0.05). Information about quality of life was more important in relatives of patients (87%) than population (65%) and doctors (63%) (p< 0.05). Quality of life was more important for doctors who arrange lung cancer treatment (76.7)% than doctors who did not (48.8%) (p< 0.05). Patients who were more children wanted to stay with their family at end stage of disease (p< 0.05). Conclusion: According to this study we think that doctors should say the diagnosis of lung cancer in the form of they understand, inform the patients and relatives about treatment, and quality of life and this can increase patient trust to doctor and compliance of patients to the treatment. © 2017, Ankara University. All rights reserved

    The validity and reliability of the turkish version of the leicester cough questionnaire in COPD patients

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    Background/aim: The reliability and validity of the Turkish version of the Leicester Cough Questionnaire (LCQ) have been evaluated before. This study aimed to validate the Turkish version of the LCQ in chronic obstructive pulmonary disease (COPD) patients with cough. Materials and methods: COPD (GOLD B, C, D) patients over age 40 (n = 75) and healthy volunteers as a control group (n = 75) were included. A sociodemographic data form, the LCQ, the Short Form-36 (SF-36) quality of life questionnaire, and the World Health Organization Quality of Life Brief Form for Turkish people were completed. The internal reliability of the LCQ was determined using the Cronbach alpha coefficient (>0.6) and its repeatability by the intraclass consistency coefficient (P 0.6). In test–retest reliability, the correlation coefficient ranged between 0.71 and 0.80 for each question and was calculated as r = 0.89 for total LCQ score (P < 0.001). Conclusion: The Turkish version of the LCQ has been found to have acceptable reliability and validity for use in Turkish COPD patients with chronic cough. © TÜBİTAK

    Asthma-KOAH overlap syndrome [Astım-KOAH overlap sendromu]

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    PubMed ID: 26963310Asthma and chronic obstructive pulmonary disease (COPD) are common lung diseases characterized by chronic airway inflammation and airway obstruction. Among patient with COPD and asthma; there is a group of patients with an overlap between clinical, functional characteristics and airway inflammation patterns, named “Asthma-COPD Overlap Syndrome” (ACOS). ACOS is a syndrome characterized by reversible but persistant airflow limitation (postbronchodilator FEV1/FVC &lt; 70%) which has some features of both asthma and COPD. ACOS should be suspected in a patient &gt; 40 years, with smoking history, previous asthma diagnosis or history of childhood asthma who has persistant airflow limitation and reversible ariway obstruction (defined by an increase of &gt; %12 of FEV1 pred or increase of FEV1 &gt; 200 mL after inhalation of 400 mcg salbutamol or 1000 mcg terbutaline). The prevalence for ACOS has been reported 11-55% in different case series to date and increases by age and is more frequent in females in different age groups. Patients with ACOS are younger than COPD patients and older than asthma patients. Frequent and severe exacerbations and related hospitalization and emergency room visits are common in ACOS and this causes an impaired quality of life. Current recommendations of guidelines for pharmacologic treatment of ACOS have been composed of a combination with optimal COPD and asthma treatment. Future therapeutic approaches should be based on endotypes. Clinical phenotype and underlying endotype driven clinical studies may be the base of ACOS guidelines. © 2015, Ankara University. All rights reserved
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