Assessing Quality of Care in Haemophilia Using a Value-Based Healthcare Approach
Author(s)
Fornari C1, Cortesi PA2, Conti S2, Pollio B3, Boccalandro E4, Buzzi A5, Carulli C6, Coppola A7, De Cristofaro R8, Di Minno G9, Dolan G10, Ferri Grazzi E11, Fornari A2, Gualtierotti R4, Hermans C12, Jiménez-Yuste V13, Kenet G14, Lupi A15, Martinoli C16, Mansueto MF17, Nicolò G4, Tagliaferri A7, Gringeri A18, Molinari AC19, Mantovani LG2, Castaman G20
1University of Milan-Bicocca, Monza, MB, Italy, 2University of Milan-Bicocca, Monza, Italy, 3Regina Margherita Children Hospital, Turin, Italy, 4Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy, 5Fondazione Paracelso, Milan, Italy, 6Univeristy of Florence, Florence, Italy, 7University Hospital of Parma, Parma, Italy, 8Fondazione Policlinico Universitario “A. Gemelli” IRCCS, Rome, Italy, 9Federico II University Hospital, Naples, Italy, 10Guys' and St Thomas' NHS Trust, London, UK, 11Federation of Haemophilia Associations (FedEmo), Milan, Italy, 12Cliniques Universitaires St-Luc, Brussels, Belgium, 13University Hospital La Paz, Madrid, Spain, 14Sheba Medical Center, Tel Hashomer, Israel, 15Federation of Haemophilia Associations (FedEmo), Rome, Italy, 16University of Genoa, Genova, Italy, 17University Hospital Paolo Giaccone, Palermo, Italy, 18CHARTA Foundation, Milan, Italy, 19IRCCS Istituto Giannina Gaslini, Genova, Italy, 20Careggi University Hospital, Florence, Italy
Presentation Documents
OBJECTIVES: Recently advances in haemophilia management and treatment improved disease management and patients’ quality of life with an increasing economic burden for healthcare systems. In this context the “Value‐Based Healthcare in Haemophilia” project aimed to define a set of clinical and patient reported healthcare outcome indicators to assess quality of care to inform and guide decision-making processes.
METHODS: The study adopted a value-based healthcare approach. We generated a set of healthcare outcome indicators to evaluate quality of care in haemophilia following a DELPHI panel consensus method, which was based on available literature, current guidelines and the involvement of a multidisciplinary group of experts. The set of indicators included both clinical and patient-reported outcomes. Thereafter, we defined two composite outcome indicators to synthesize the clinical and the patient-reported dimensions.
RESULTS: Eight outcome indicators were defined and externally validated: 3 for the clinical dimension, focused on two domains (musculoskeletal health, function and safety), and 5 for the patient-reported one including five domains (bleeding frequency, pain, mobility and physical activities, quality of life and satisfaction). For each outcome, the expert group identified the appropriate measuring tool to fulfill the agreed definition. Composite outcome indicators were identified as follows: 1) a combination of outcomes related to musculoskeletal health; 2) a combination of outcomes related to pain and mobility and physical activity.
CONCLUSIONS: The defined set of healthcare outcomes indicators constitutes the basis for harmonized, longitudinal and cross-sectional monitoring and comparison of the quality of care in haemophilia both at patient and at healthcare center level. The implementation of this value-based approach could enable a more robust assessment of quality of care within a framework of continuous treatment improvements and with potential added value for patients. Further developments and adjustments of the proposed outcome indicators are warranted.
Conference/Value in Health Info
Value in Health, Volume 26, Issue 11, S2 (December 2023)
Code
PCR191
Topic
Patient-Centered Research, Study Approaches
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes, Surveys & Expert Panels
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Rare & Orphan Diseases