A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease

Abstract Background Value assessment of vaccination programs against serogroup B invasive meningococcal disease (IMD) is on the agenda of public health authorities. Current evidence on the burden due to IMD is unfit for pinning down the nature and magnitude of the full social and economic costs of I...

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Main Authors: Ole Marten, Florian Koerber, David Bloom, Monika Bullinger, Corinne Buysse, Hannah Christensen, Philippe De Wals, Christian Dohna-Schwake, Philipp Henneke, Markus Kirchner, Markus Knuf, Burkhard Lawrenz, Andrea L. Monteiro, Joseph Patrick Sevilla, Nicolas Van de Velde, Robert Welte, Claire Wright, Wolfgang Greiner
Format: Article
Language:English
Published: BMC 2019-05-01
Series:Health and Quality of Life Outcomes
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Online Access:http://link.springer.com/article/10.1186/s12955-019-1159-0
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author Ole Marten
Florian Koerber
David Bloom
Monika Bullinger
Corinne Buysse
Hannah Christensen
Philippe De Wals
Christian Dohna-Schwake
Philipp Henneke
Markus Kirchner
Markus Knuf
Burkhard Lawrenz
Andrea L. Monteiro
Joseph Patrick Sevilla
Nicolas Van de Velde
Robert Welte
Claire Wright
Wolfgang Greiner
author_facet Ole Marten
Florian Koerber
David Bloom
Monika Bullinger
Corinne Buysse
Hannah Christensen
Philippe De Wals
Christian Dohna-Schwake
Philipp Henneke
Markus Kirchner
Markus Knuf
Burkhard Lawrenz
Andrea L. Monteiro
Joseph Patrick Sevilla
Nicolas Van de Velde
Robert Welte
Claire Wright
Wolfgang Greiner
author_sort Ole Marten
collection DOAJ
description Abstract Background Value assessment of vaccination programs against serogroup B invasive meningococcal disease (IMD) is on the agenda of public health authorities. Current evidence on the burden due to IMD is unfit for pinning down the nature and magnitude of the full social and economic costs of IMD for two reasons. First, the concepts and components that need to be studied are not agreed, and second, measures of the concepts that have been studied are weak and inconsistent. Thus, the economic evaluation of the available serogroup B meningococcal (MenB) vaccines is difficult. The aims of this DELPHI study are to: (1) agree on the concepts and components determining the burden of MenB diseases that need to be studied; and (2) seek consensus on appropriate methods and study designs to measure quality of life (QoL) associated with MenB induced long-term sequelae in future studies. Methods We designed a DELPHI questionnaire based on the findings of a recent systematic review on the QoL associated with IMD-induced long-term sequelae, and iteratively interviewed a panel of international experts, including physicians, health economists, and patient representatives. Experts were provided with a controlled feedback based on the results of the previous round. Results Experts reached consensus on all questions after two DELPHI rounds. Major gaps in the literature relate (i) to the classification of sequelae, which allows differentiation of severity levels, (ii) to the choice of QoL measures, and (iii) to appropriate data sources to examine long-term changes and deficits in patients’ QoL. Conclusions Better conceptualisation of the structure of IMD-specific sequelae and of how their diverse forms of severity might impact the QoL of survivors of IMD as well as their family network and care-providers is needed to generate relevant, reliable and generalisable data on QoL in the future. The results of this DELPHI panel provide useful guidance on how to choose the study design, target population and appropriate QoL measures for future research and hence, help promote the appropriateness and consistency in study methodology and sample characteristics.
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spelling doaj.art-fbfbad814e8544fab6637562bcbd08442022-12-21T23:55:27ZengBMCHealth and Quality of Life Outcomes1477-75252019-05-011711910.1186/s12955-019-1159-0A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal diseaseOle Marten0Florian Koerber1David Bloom2Monika Bullinger3Corinne Buysse4Hannah Christensen5Philippe De Wals6Christian Dohna-Schwake7Philipp Henneke8Markus Kirchner9Markus Knuf10Burkhard Lawrenz11Andrea L. Monteiro12Joseph Patrick Sevilla13Nicolas Van de Velde14Robert Welte15Claire Wright16Wolfgang Greiner17Department of Health Economics and Health Care Management, School of Public Health, Bielefeld UniversityGSKDepartment of Global Health and Population, Harvard T.H. Chan School of Public HealthDepartment of Medical Psychology, University Medical Center Hamburg-EppendorfDepartment of Pediatrics, Intensive Care Unit, Erasmus Medical Center, Sophia Children’s HospitalPopulation Health Sciences, Bristol Medical School, University of BristolDepartment of Social and Preventive Medicine, Laval UniversityPediatrics I, University Hospital of EssenCenter for Pediatrics and Adolescent Medicine and Center for Chronic Immunodeficiency, Medical Center - University of FreiburgGSKHELIOS Dr. Horst Schmidt Kliniken, Children‘s HospitalAssociation of Professional Pediatricians and Adolescent Medicine Specialists in Germany (Berufsverband der Kinder- und Jugendärzte e.V., BVKJ)Asas Avaliacoes Economicas Em Saude Ltda MELife Sciences Group, Data for Decisions, LLCGSKGSKMeningitis Research FoundationDepartment of Health Economics and Health Care Management, School of Public Health, Bielefeld UniversityAbstract Background Value assessment of vaccination programs against serogroup B invasive meningococcal disease (IMD) is on the agenda of public health authorities. Current evidence on the burden due to IMD is unfit for pinning down the nature and magnitude of the full social and economic costs of IMD for two reasons. First, the concepts and components that need to be studied are not agreed, and second, measures of the concepts that have been studied are weak and inconsistent. Thus, the economic evaluation of the available serogroup B meningococcal (MenB) vaccines is difficult. The aims of this DELPHI study are to: (1) agree on the concepts and components determining the burden of MenB diseases that need to be studied; and (2) seek consensus on appropriate methods and study designs to measure quality of life (QoL) associated with MenB induced long-term sequelae in future studies. Methods We designed a DELPHI questionnaire based on the findings of a recent systematic review on the QoL associated with IMD-induced long-term sequelae, and iteratively interviewed a panel of international experts, including physicians, health economists, and patient representatives. Experts were provided with a controlled feedback based on the results of the previous round. Results Experts reached consensus on all questions after two DELPHI rounds. Major gaps in the literature relate (i) to the classification of sequelae, which allows differentiation of severity levels, (ii) to the choice of QoL measures, and (iii) to appropriate data sources to examine long-term changes and deficits in patients’ QoL. Conclusions Better conceptualisation of the structure of IMD-specific sequelae and of how their diverse forms of severity might impact the QoL of survivors of IMD as well as their family network and care-providers is needed to generate relevant, reliable and generalisable data on QoL in the future. The results of this DELPHI panel provide useful guidance on how to choose the study design, target population and appropriate QoL measures for future research and hence, help promote the appropriateness and consistency in study methodology and sample characteristics.http://link.springer.com/article/10.1186/s12955-019-1159-0Quality of lifeMeningococcal diseaseNeisseria meningitidisDELPHI
spellingShingle Ole Marten
Florian Koerber
David Bloom
Monika Bullinger
Corinne Buysse
Hannah Christensen
Philippe De Wals
Christian Dohna-Schwake
Philipp Henneke
Markus Kirchner
Markus Knuf
Burkhard Lawrenz
Andrea L. Monteiro
Joseph Patrick Sevilla
Nicolas Van de Velde
Robert Welte
Claire Wright
Wolfgang Greiner
A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease
Health and Quality of Life Outcomes
Quality of life
Meningococcal disease
Neisseria meningitidis
DELPHI
title A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease
title_full A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease
title_fullStr A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease
title_full_unstemmed A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease
title_short A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease
title_sort delphi study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup b invasive meningococcal disease
topic Quality of life
Meningococcal disease
Neisseria meningitidis
DELPHI
url http://link.springer.com/article/10.1186/s12955-019-1159-0
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