Dataset Information

Inhibitor clinical burden of disease: a comparative analysis of the CHESS data.

ABSTRACT:

Background

Patients with hemophilia and inhibitors generally face greater disease burden compared to patients without inhibitors. While raising awareness of relative burden may improve the standard of care for patients with inhibitors, comparative data are sparse. Analyzing data drawn from the Cost of Haemophilia across Europe - a Socioeconomic Survey (CHESS) study, the aim of this study was to compare the clinical burden of disease in patients with severe hemophilia with and without inhibitors. Hemophilia specialists (N?=?139) across five European countries completed an online survey between January-April 2015, providing demographic, clinical and 12-month ambulatory/secondary care activity data for 1285 patients. Patients with hemophilia who currently presented with inhibitors and those who never had inhibitors were matched on baseline characteristics via propensity score matching. Outcomes were compared between the two cohorts using a paired t-test or Wilcoxon signed-rank or McNemar's test.

Results

The proportion of patients who currently presented with inhibitors was 4.5% (58/1285). Compared to PS-matched patients without inhibitors, patients with inhibitors experienced more than twice the mean annual number of bleeds (mean?±?standard deviation, 8.29?±?9.18 vs 3.72?±?3.95; p?ConclusionsPatients with hemophilia and inhibitors exhibited greater clinical burden and higher resource utilization compared to their peers without inhibitors. Strategies for improving the standard of care may alleviate burden in this population.

SUBMITTER: Oladapo AO

PROVIDER: S-EPMC6230298 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Publications

Inhibitor clinical burden of disease: a comparative analysis of the CHESS data.

Oladapo Abiola O AO Lu Mei M Walsh Shaun S O'Hara Jamie J Kauf Teresa L TL

Orphanet journal of rare diseases 20181109 1

<h4>Background</h4>Patients with hemophilia and inhibitors generally face greater disease burden compared to patients without inhibitors. While raising awareness of relative burden may improve the standard of care for patients with inhibitors, comparative data are sparse. Analyzing data drawn from the Cost of Haemophilia across Europe - a Socioeconomic Survey (CHESS) study, the aim of this study was to compare the clinical burden of disease in patients with severe hemophilia with and without inh ...[more]

PMID: 30413215

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Project description:BackgroundMinisters of health, donor agencies, philanthropists, and international agencies will meet at Bamako, Mali, in November, 2008, to review global priorities for health research. These individuals and organisations previously set health priorities for WHO, either through its regular budget or extra-budgetary funds. We asked what insights can be gained as to their priorities from previous decisions within the context of WHO.MethodsWe compared the WHO biennial budgetary allocations with the burden of disease from 1994-95 to 2008-09. We obtained data from publicly available WHO sources and examined whether WHO allocations varied with the burden of disease (defined by death and disability-adjusted life years) by comparing two WHO regions-Western Pacific and Africa-that are at differing stages of epidemiological transition. We further assessed whether the allocations differed on the basis of the source of funds (assessed and voluntary contributions) and the mechanism for deciding how funds were spent.FindingsWe noted that WHO budget allocations were heavily skewed toward infectious diseases. In 2006-07, WHO allocated 87% of its total budget to infectious diseases, 12% to non-communicable diseases, and less than 1% to injuries and violence. We recorded a similar distribution of funding in Africa, where nearly three-quarters of mortality is from infectious disease, and in Western Pacific, where three-quarters of mortality is from non-communicable disease. In both regions, injuries received only 1% of total resources. The skew towards infectious diseases was substantially greater for the WHO extra-budget, which is allocated by donors and has risen greatly in recent years, than for the WHO regular budget, which is decided on by member states through democratic mechanisms and has been held at zero nominal growth.InterpretationDecision makers at Bamako should consider the implications of the present misalignment of global health priorities and disease burden for health research worldwide. Funds allocated by external donors substantially differ from those allocated by WHO member states. The meeting at Bamako provides an opportunity to consider how this disparity might be addressed.

Dataset Information

Inhibitor clinical burden of disease: a comparative analysis of the CHESS data.

Background

Results

Publications

Inhibitor clinical burden of disease: a comparative analysis of the CHESS data.

Similar Datasets

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