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1.
Orphanet J Rare Dis ; 18(1): 183, 2023 Jul 07.
Article in English | MEDLINE | ID: mdl-37420270

ABSTRACT

Multiple sclerosis (MS) may impact quality of life, careers and family plans of the affected individuals. The current treatments with disease modifying therapies aim to prevent people with MS (pwMS) from disability accumulation and progression. Different countries have different reimbursement policies resulting in inequalities in patient care among geographical regions. Access to anti-CD20 therapies for relapsing MS is restricted in Hungary because therapy of individual cases only is reimbursed. In the light of the latest research and national guidelines, 17 Hungarian MS experts agreed on 8 recommendations regarding relapsing pwMS using the Delphi round method. Strong agreement (> 80%) was achieved in all except one recommendation after three rounds, which generated a fourth Delphi round. The experts agreed on treatment initiation, switch, follow-up and discontinuation, as well as on special issues such as pregnancy, lactation, elderly population, and vaccination. Well-defined national consensus protocols may facilitate dialogue between policymakers and healthcare professionals and thus contribute to better patient care in the long run.


Subject(s)
Multiple Sclerosis , Aged , Pregnancy , Female , Humans , Hungary , Quality of Life , Consensus
2.
Mult Scler ; 23(2_suppl): 91-103, 2017 Aug.
Article in English | MEDLINE | ID: mdl-28643591

ABSTRACT

INTRODUCTION: To estimate the value of interventions in multiple sclerosis (MS) - where lifetime costs and outcomes cannot be observed - outcome data have to be combined with costs. This requires that cost data be regularly updated. OBJECTIVES AND METHODS: This study is part of a cross-sectional retrospective study in 16 countries collecting data on resource consumption, work capacity, health-related quality of life (HRQoL) and prevalent symptoms for patients with MS. Descriptive analyses are presented by level of disability, from the societal perspective, in HUF 2015. RESULTS: A total of 521 patients (mean age 47 years) participated; 85% were below retirement age, and of these, 47% were employed. Employment was related to disability and MS affected productivity at work for 82% of those working. Overall, 94% and 66% of patients experienced fatigue and cognitive difficulties as a problem, respectively. The mean utility and annual costs were 0.691 and 3,432,000HUF at Expanded Disability Status Scale (EDSS) 0-3, 0.491 and 5,262,000HUF at EDSS 4-6.5 and 0.076 and 6,235,000HUF at EDSS 7-9, respectively. The average cost of a relapse was estimated at 240,500HUF. CONCLUSION: This study illustrates the burden of MS on Hungarian patients and provides current data that are important for the development of health policies.


Subject(s)
Cost of Illness , Employment/statistics & numerical data , Health Care Costs/statistics & numerical data , Multiple Sclerosis , Quality of Life , Adult , Aged , Cross-Sectional Studies , Efficiency , Female , Humans , Hungary , Male , Middle Aged , Multiple Sclerosis/economics , Multiple Sclerosis/epidemiology , Multiple Sclerosis/physiopathology , Multiple Sclerosis/therapy , Retrospective Studies , Severity of Illness Index
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