| Title: |
The value‐based healthcare approach to haemophilia: Development of outcome measures for the evaluation of care of people with haemophilia |
| Authors: |
Cortesi, PA; Fornari, C; Conti, S; Pollio, B; Boccalandro, E; Buzzi, A; Carulli, C; Coppola, A; De Cristofaro, R; Di Minno, MND; Dolan, G; Grazzi, EF; Fornari, A; Gualtierotti, R; Hermans, C; Jiménez-Juste, V; Kenet, G; Lupi, A; Martinoli, C; Mansueto, MF; Nicolò, G; Tagliaferri, A; Gringeri, A; Molinari, AC; Mantovani, LG; Castaman, G |
| Contributors: |
Cortesi, P; Fornari, C; Conti, S; Pollio, B; Boccalandro, E; Buzzi, A; Carulli, C; Coppola, A; De Cristofaro, R; Di Minno, M; Dolan, G; Grazzi, E; Fornari, A; Gualtierotti, R; Hermans, C; Jiménez-Juste, V; Kenet, G; Lupi, A; Martinoli, C; Mansueto, M; Nicolò, G; Tagliaferri, A; Gringeri, A; Molinari, A; Mantovani, L; Castaman, G |
| Publisher Information: |
Wiley-Blackwell Publishing Ltd.; GB |
| Publication Year: |
2024 |
| Collection: |
Università degli Studi di Milano-Bicocca: BOA (Bicocca Open Archive) |
| Subject Terms: |
haemophilia; outcome assessment; patient reported outcome measure; quality indicator; treatment outcome; value-based purchasing; Settore MEDS-24/B - Igiene generale e applicata |
| Description: |
Introduction: Considering the advances in haemophilia management and treatment observed in the last decades, a new set of value-based outcome indicators is needed to assess the quality of care and the impact of these medical innovations. Aim: The Value-Based Healthcare in Haemophilia project aimed to define a set of clinical outcome indicators (COIs) and patient-reported outcome indicators (PROIs) to assess quality of care in haemophilia in high-income countries with a value-based approach to inform and guide the decision-making process. Methods: A Value-based healthcare approach based on the available literature, current guidelines and the involvement of a multidisciplinary group of experts was applied to generate a set of indicators to assess the quality of care of haemophilia. Results: A final list of three COIs and five PROIs was created and validated. The identified COIs focus on two domains: musculoskeletal health and function, and safety. The identified PROIs cover five domains: bleeding frequency, pain, mobility and physical activities, Health-Related Quality of Life and satisfaction. Finally, two composite outcomes, one based on COIs, and one based on PROIs, were proposed as synthetic outcome indicators of quality of care. Conclusion: The presented standard set of health outcome indicators provides the basis for harmonised longitudinal and cross-sectional monitoring and comparison. The implementation of this value-based approach would enable a more robust assessment of quality of care in haemophilia, within a framework of continuous treatment improvements with potential added value for patients. Moreover, proposed COIs and PROIs should be reviewed and updated routinely. |
| Document Type: |
article in journal/newspaper |
| File Description: |
STAMPA |
| Language: |
English |
| Relation: |
info:eu-repo/semantics/altIdentifier/pmid/38314918; info:eu-repo/semantics/altIdentifier/wos/WOS:001157705600001; volume:30; issue:2 (March 2024); firstpage:437; lastpage:448; numberofpages:12; journal:HAEMOPHILIA; https://hdl.handle.net/10281/459420 |
| DOI: |
10.1111/hae.14943 |
| Availability: |
https://hdl.handle.net/10281/459420; https://doi.org/10.1111/hae.14943 |
| Accession Number: |
edsbas.539CDA4D |
| Database: |
BASE |