Pro34 Economics and Quality of Life of Patients With Hemophilia in Russia for 2007 - 2017: Results of Standardization Use in Therapy

Krasnova, L.; Vorobiev, P.; Vorobiev, A.; Holownia, M.

doi:10.1016/j.jval.2019.04.1667

Cited by 5 publications

(2 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…30 The mean EQ-VAS scores showed the same tendency with 78.55 among children and 59.23 among adults, and the mean EQ-VAS scores among patients in all age groups in Russia was 60.9. 31 Our results also provoke attention to improving the social adaptation of hemophilia patients. For children, 53% of them were lack of formal education even though they were supposed to be students.…”

Section: Discussionmentioning

confidence: 53%

See 1 more Smart Citation

Overview of Patients with Hemophilia in China: Demographics, Diseases, Treatment, and Health Status

Zhang,

Chen

2024

PPA

View full text Add to dashboard Cite

Background In China, there were over 65,000 hemophilia patients according to estimations requiring overall description. However, former Chinese studies related to hemophilia were based on data of relatively small sample size from single-center or selected multi-centers in specific areas. Objective This study is aimed to provide an overview of patients with hemophilia in China and basic information for optimized hemophilia care and policy decisions in the future. Methods We cooperated with the biggest patient organization of hemophilia in China, Hemophilia Home, got access to over ten thousand registered patients with hemophilia and conducted a national representative online survey in 2021. Descriptive statistics were conducted to describe the mean and standard deviation for continuous variables and numbers and proportions for categorical variables. Results Nine hundred and fifty patients with hemophilia aged 0–71 years were included in our analysis and divided into 538 children and 412 adults. Compared to international research, consistent results were found regarding the proportions of hemophilia types and hemophilia severity, while Chinese patients had less opportunity to receive the formal education and the lower rate to be employed or married. Although children with hemophilia had higher household income, timely treatment, and more prophylaxis treatment leading to better clinical outcomes and higher HRQoL than adults, there were still more annual bleeds, chronic pains, and lower EQ-VAS scores especially in adults than in other countries. Conclusions and Recommendation Our findings suggest the urgency for promoting hemophilia care and improving the social adaptation of hemophilia patients in China.

show abstract

Section: Discussionmentioning

confidence: 53%

“… 30 The mean EQ-VAS scores showed the same tendency with 78.55 among children and 59.23 among adults, and the mean EQ-VAS scores among patients in all age groups in Russia was 60.9. 31 …”

Section: Discussionmentioning

confidence: 99%

Overview of Patients with Hemophilia in China: Demographics, Diseases, Treatment, and Health Status

Zhang,

Chen

2024

PPA

View full text Add to dashboard Cite

show abstract

Analysis of actual results of drug supply implementation within framework of High-Cost Nosologies Program

Ivakhnenko,

Ryazhenov,

Maksimkina

et al. 2024

Farm. farmakol. (Pâtigorsk)

View full text Add to dashboard Cite

The accessibility and pharmaceutical care coverage are linked to political, economic and managerial decisions. That fact necessitates the evaluation of the state programs results in the field of the drug provision.The aim of the work was to assess the quantitative results of the implementation of the High-Cost Nosologies program in the Russian Federation from 2008 to 2023 to determine further vectors of its improvement.Materials and methods. The regulatory base of the work was made up of the Russian Federation legislation in the field of the drug provision. The open sources were used as the research information base for the data collection and analysis: reports of federal and regional executive authorities, materials of specialized conferences, results of published studies.Results. The drug coverage under the High-Cost Nosologies (VZN) program is provided for 14 nosologies, 11 of which are classified as orphan diseases. Since its implementation, the HCNs program has been expanded twice by including new nosologies in 2019 and 2020. As of 01 October 2023, the number of patients in the Federal Register of VZN was 263 721 people, which was 13.58 times greater compared to 2008. The drug provision is carried out according to the list of 47 INNs. The amount of funding for the program increased from RUB 32 bn in 2008 to RUB 87.96 bn in 2023. The most resource-intensive nosologies include hemophilia, multiple sclerosis and oncohematology.Conclusion. The main quantitative characteristics of the implementation of the HCNs program and the identified vectors for its further improvement have been analyzed in this study. The results obtained can be used to conduct analytical studies, including the ones within nosologies and nosological groups included in the program, in order to optimize a pharmaceutical care. The focus of improving the implementation of the VZN program is related to the improvement of the legal framework, a patient treatment paradigm and approaches to its financing.

show abstract

Unsolved issues of providing medical care to patients with hemophilia with inhibitors in Russia

Зозуля

Чернов

Tarasova

et al. 2019

Ross. ž. det. gematol. onkol.

View full text Add to dashboard Cite

The implementation of the state program “7 highcost nosologies” and the active work of Russian hematologists have significantly improved the specialized care for children and adults with Hemophilia. Russian hemophilia patient registry as of 10.25.2018 contained information about 7433 patients, of whom with hemophilia A – 6525 people. About 400 people were diagnosed with hemophilia with inhibitors. The inhibitor predominantly appeared at child and young age (up to 20 years). There is a high supply of coagulation factors concentrates for the treatment of hemophilia in the Russian Federation – 8.1 IU of coagulation factor VIII per capita in 2018, which corresponds to the graduation “full integration into society” according to the scale proposed by the World Hemophilia Federation. Due to the sufficient availability of coagulation factors, it is possible to conduct elimination of inhibitors by immune tolerance induction. Treatment with antiinhibitor coagulant complex and eptacog alfa (activated) requires a good venous access and is not always effective. Treatment results remain unsatisfactory in 67 % of adult patients with severe hemophilia with low inhibitor titer due to the number of bleeding per year exceeds 4. Unsatisfactory treatment results are noted in more than 1/ 3 patients with a high inhibitor titer, despite the ongoing prophylaxis with bypassing agents. Currently, clinical studies of fundamentally new drugs for hemophilia treatment, including the inhibitory form, are ongoing. One such drug is emicizumab, which is a bispecific humanized monoclonal antibody that bridges activated factor IX and factor X to restore the function of missing activated factor VIII Emicizumab is not neutralized by inhibitors to FVIII, which allows it to be successfully used in the inhibitory form of hemophilia A. The results of HAVEN 1 and HAVEN 2 studies showed the advantages of using emicizumab in prophylactic regimen in children and adults with the inhibitory form of hemophilia A compared with bypassing agents.

show abstract

Pro34 Economics and Quality of Life of Patients With Hemophilia in Russia for 2007 - 2017: Results of Standardization Use in Therapy

Cited by 5 publications

References 0 publications

Overview of Patients with Hemophilia in China: Demographics, Diseases, Treatment, and Health Status

Overview of Patients with Hemophilia in China: Demographics, Diseases, Treatment, and Health Status

Analysis of actual results of drug supply implementation within framework of High-Cost Nosologies Program

Unsolved issues of providing medical care to patients with hemophilia with inhibitors in Russia

Contact Info

Product

Resources

About