scholarly journals Modern aspects of the study of the quality of life in children with cystic fibrosis

Author(s):  
M. S. Samsonova ◽  
O. I. Simonova ◽  
Irina V. Vinyarskaya

There is presented a review of recent data on the changes in quality of life (QL) in children suffering from cystic fibrosis (CF). The recurrence of acute pulmonary infections was shown to significantly reduce health-related QL. In this aggressive treatment of exacerbations ofpulmonary infection leads to a significant improvement in QL, and to gain in the life expectancy ofpatients with CF. Used in clinical practice methods demonstrate the effectiveness in the short term period, but their impact on health-related QL has not yet been studied. The use of the concept of Quality adjusted life year (QALY) in conjunction with the pharmacoeconomic analysis is the one out of promising directions, which allows in the comparative plan to determine the ratio between cost and effectiveness, safety and QL in alternative schemes of treatment of the disease. The use of the QALY index in the analysis of the CF will allow to execute the cumulative determination as the ratio of "cost-effectiveness", and the influence of the conducted therapy on health-related QL ofpatients, which is an inherent component of the evaluation of the estimation of usefulness of specific therapeutic approaches.

1988 ◽  
Vol 23 ◽  
pp. 33-55 ◽  
Author(s):  
Michael Lockwood

A new word has recently entered the British medical vocabulary. What it stands for is neither a disease nor a cure. At least, it is not a cure for a disease in the medical sense. But it could, perhaps, be thought of as an intended cure for a medicosociological disease: namely that of haphazard or otherwise ethically inappropriate allocation of scarce medical resources. What I have in mind is the term ‘QALY’, which is an acronym standing for quality adjusted life year. Just what this means and what it is intended to do I shall explain in due course. Let me first, however, set the scene.


2017 ◽  
Vol 16 ◽  
pp. S154
Author(s):  
M. Van Horck ◽  
B. Winkens ◽  
G. Wesseling ◽  
K. de Winter-de Groot ◽  
I. De Vreede ◽  
...  

Folia Medica ◽  
2015 ◽  
Vol 57 (1) ◽  
pp. 56-64 ◽  
Author(s):  
Georgi G. Iskrov ◽  
Rumen S. Stefanov ◽  
Julio López-Bastida ◽  
Renata Linertová ◽  
Juan Oliva-Moreno ◽  
...  

AbstractObjective:The aim of this study was to determine the economic burden from a societal perspective and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) in Bulgaria.Materials and methods:We conducted a cross-sectional study of 33 patients with CF and 17 caregivers from Bulgaria. Data on socio-demographic characteristics, health resource utilisation, informal care, labor productivity losses and HRQOL were collected from questionnaires completed by patients or their caregivers. HRQOL was evaluated with the EuroQol 5-domain (EQ-5D-3L) questionnaire.Results:Median annual costs of CF in Bulgaria were € 24 152 per patient in 2012 as a reference year. Median annual costs for children were found to be significantly higher than those for adults – € 31 945 vs. € 15 714 (p = 0.012). This outcome came from statistically significant differences in costs for main informal carer (p < 0.001) and costs for other informal carers (p = 0.022). As a single cost item, drugs had the biggest monetary impact. Median annual drug costs were € 13 059. Bulgarian CF patients showed low HRQOL results – 50 median VAS score and 0.592 median health utilities. A quarter of patients even rated their health state as worse than death.Conclusion:CF patients from Eastern Europe remain a vulnerable population with risk factors for worse health outcomes. Our study provided a state-of-the art analysis that facilitates the elaboration, adoption and application of targeted public health policies to tackle CF-related problems at national and European level.


CHEST Journal ◽  
2011 ◽  
Vol 140 (1) ◽  
pp. 170-177 ◽  
Author(s):  
Audrey Tluczek ◽  
Tara Becker ◽  
Anita Laxova ◽  
Adam Grieve ◽  
Caroline N. Racine Gilles ◽  
...  

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