Health related quality of life and disease burden of patients with cystic fibrosis and their caregivers: Results of the European BURQOL-RD survey in Hungary

Péntek, Márta; Kosztolányi, György; Melegh, Béla; Halász, Adrienn; Pogány, Gábor; Baji, Petra; Brodszky, Valentin; Hevér, Noémi Vártokné; Boncz, I; Gulàcsi, László

doi:10.1556/oh.2014.30016

Cited by 7 publications

(9 citation statements)

References 37 publications

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“…Two of them were large European multi-country studies that involved more than one CEE country [45,46]. Overall 152 reports on country level results were obtained: Austria (n=11) [47][48][49][50][51][52][53][54][55][56][57], Bulgaria (n=6) [45,46,58,59,13], Czech Republic (n=18) [60,61,45,46,[62][63][64][65][66]20,[67][68][69][70][71][72][73][74], Hungary (n=47) [11,75,76,45,[77][78][79][80][81][82][83][84][85][86]…”

Section: Search Resultsmentioning

confidence: 99%

“…Eleven studies (8%) employed the EQ-5D-5L [46,65,88,97,77,81,82,130,164,160,165]. No articles reported results on the youth version of the questionnaire (EQ-5D-Y), possibly because the validation process of the CEE national language versions was only completed in May 2015.…”

Section: Eq-5d Results: Versions Of Questionnaire Methods Of Reportimentioning

confidence: 99%

“…Almost all studies (n=126; 88%) were conducted as an on-site survey using a paper-based questionnaire. In addition, we identified six online or e-mail [11,[80][81][82]182,173] and six postal surveys [86,95,53,123,174,180]. In three studies patients were permitted to complete the questionnaire at home and return it later [91,170,179].…”

Section: Characteristics Of the Studiesmentioning

confidence: 99%

“…The most common diagnoses were ischaemic heart disease (n=14), diabetes (n=10), Parkinson's Нisease (n=9), multiple sclerosis (n=8), chronic pain and rheumatoid arthritis (n=6 for both) ( Figure 4). Four stuНies assesseН not onlв tСe patients' СealtС status Лut tСe МareРivers' as аell [89,81,82,182].…”

Section: Clinical Areasmentioning

confidence: 99%

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EQ-5D in Central and Eastern Europe: 2000–2015

et al. 2016

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Increasing use of EQ-5D is observed throughout CEE. The spread of health technology assessment activities in countries seems to be reflected in the number of EQ-5D studies. However, improvement in informed use and methodological quality of reporting is needed. In jurisdictions where no national value set is available, in order to ensure comparability we recommend to apply the most frequently used UK tariff. Regional collaboration between CEE countries should be strengthened.

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Section: Search Resultsmentioning

confidence: 99%

Section: Eq-5d Results: Versions Of Questionnaire Methods Of Reportimentioning

confidence: 99%

Section: Characteristics Of the Studiesmentioning

confidence: 99%

Section: Clinical Areasmentioning

confidence: 99%

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EQ-5D in Central and Eastern Europe: 2000–2015

et al. 2016

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“…Details of the project and selection of the ten rare diseases have been described elsewhere [14][15][16][17]. In this paper, we report results obtained in MPS in the context of the BURQOL-RD project.…”

Section: Introductionmentioning

confidence: 99%

Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe

et al. 2016

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Cost-of-Illness in Rare Diseases

Linertová

García-Pérez

Gorostiza

2017

Advances in Experimental Medicine and Biology

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Cost-of-illness (COI) studies quantify the economic burden of a disease, including direct healthcare and non-healthcare costs and productivity losses. Different approaches can be adopted to evaluate the resources associated to a disease and to calculate the total costs. Prevalence-based studies estimate the total costs of a disease during a given period, while incidence-based studies measure lifetime costs from onset until death. Data can be collected from individuals, using a bottom-up approach, or from population statistics, using a top-down approach. Different perspectives are possible, but the broadest and also mostly used is the societal one. Appropriate discounting should be applied for future costs and a sensitivity analyses of main parameters should be performed. The main limitation of COI studies is that they don't account the outcomes or benefits of possible treatments.There is a lack of COI studies in the field of rare diseases. A multinational COI study (BURQOL-RD) evaluated recently the burden of 10 rare diseases in Europe, using a prevalence-based method with a bottom-up approach to quantify resources from a societal perspective, which is the mostly used methodology for COI studies in rare diseases; however, several other studies illustrate different approaches to conduct COI analysis in this field, such as incidence-based methods or narrower perspectives.COI studies are useful to inform policy-makers about the magnitude of a disease. To support correctly the decision-making process, it is necessary to identify the cost-drivers through COI studies with robust design and standardized methodology.

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Health related quality of life and disease burden of patients with cystic fibrosis and their caregivers: Results of the European BURQOL-RD survey in Hungary

Abstract: Cystic fibrosis leads to significant deterioration of quality of life. This study is the first from the Central Eastern European region that provides basic inputs for further health economic evaluations of cystic fibrosis care.

Cited by 7 publications

References 37 publications

EQ-5D in Central and Eastern Europe: 2000–2015

EQ-5D in Central and Eastern Europe: 2000–2015

Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe

Cost-of-Illness in Rare Diseases

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