Chatree Chai-Adisaksopha1,2, Declan Noone3,4, Randall Curtis5, Neil Frick6, Michael B Nichol7, Federico Germini1,8, Brian O'Mahony9,10, David Page11, Jeffrey S Stonebraker12, Mark W Skinner8,13, Alfonso Iorio8,14. 1. Department of Medicine, McMaster University, Hamilton, ON, Canada. 2. Department of Internal Medicine, Chiang Mai University, Chiang Mai, Thailand. 3. Health Decisions Consultants, Dublin, Ireland. 4. European Haemophilia Consortium, Brussels, Belgium. 5. Factor VIII Computing, Berkeley, CA, USA. 6. National Hemophilia Foundation, New York, NY, USA. 7. Sol Price School of Public Policy, University of Southern California, Los Angeles, CA, USA. 8. Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada. 9. Trinity College Dublin, Dublin, Ireland. 10. Irish Haemophilia Society, Dublin, Ireland. 11. Canadian Hemophilia Society, Montreal, QC, Canada. 12. Poole College of Management, North Carolina State University, Raleigh, NC, USA. 13. Institute for Policy Advancement Ltd, Washington, DC, USA. 14. McMaster-Bayer Endowed Research Chair in Clinical Epidemiology of Congenital Bleeding Disorders, Department of Medicine, McMaster, Hamilton, ON, Canada.
Abstract
INTRODUCTION: There are limited data on the impact of haemophilia on health status and health-related quality of life (HRQL) in people with non-severe (mild and moderate) haemophilia. AIM: To evaluate the health status of people living with mild or moderate haemophilia. METHODS: Data on respondents with no bleeding disorder (NoBD), mild and moderate haemophilia patients were drawn from the PROBE study. Respondents were enrolled using network patient organizations. This analysis was performed as a cross-sectional study. Primary outcomes were reported bleeding, acute and chronic pain, activities of daily living and HRQL. RESULTS: A total of 862 respondents with NoBD (n = 173), mild (n = 102) and moderate (n = 134) haemophilia were eligible, with a median age of 33, 42 and 43, respectively. In relation to haemophilia-related sequalae, 53% of male and 29% of female patients with mild and 83% of males with moderate haemophilia had more than 2-3 bleeds in the last 12 months. Reporting of acute and chronic pain is less in those with NoBD compared to the mild and moderate cohorts for both genders. Multivariate analysis demonstrates significant reductions in quality of life using VAS, EQ-5D-5L and PROBE for males with mild and moderate haemophilia (P ≤ .001) with only PROBE indicating a significant reduction for females with mild (P = .002). CONCLUSION: People affected by mild or moderate haemophilia report a significant HRQL impact due to haemophilia-related bleeding. Future research is needed to identify the optimal care management of patients with mild and moderate haemophilia.
INTRODUCTION: There are limited data on the impact of haemophilia on health status and health-related quality of life (HRQL) in people with non-severe (mild and moderate) haemophilia. AIM: To evaluate the health status of people living with mild or moderate haemophilia. METHODS: Data on respondents with no bleeding disorder (NoBD), mild and moderate haemophiliapatients were drawn from the PROBE study. Respondents were enrolled using network patient organizations. This analysis was performed as a cross-sectional study. Primary outcomes were reported bleeding, acute and chronic pain, activities of daily living and HRQL. RESULTS: A total of 862 respondents with NoBD (n = 173), mild (n = 102) and moderate (n = 134) haemophilia were eligible, with a median age of 33, 42 and 43, respectively. In relation to haemophilia-related sequalae, 53% of male and 29% of female patients with mild and 83% of males with moderate haemophilia had more than 2-3 bleeds in the last 12 months. Reporting of acute and chronic pain is less in those with NoBD compared to the mild and moderate cohorts for both genders. Multivariate analysis demonstrates significant reductions in quality of life using VAS, EQ-5D-5L and PROBE for males with mild and moderate haemophilia (P ≤ .001) with only PROBE indicating a significant reduction for females with mild (P = .002). CONCLUSION:People affected by mild or moderate haemophilia report a significant HRQL impact due to haemophilia-related bleeding. Future research is needed to identify the optimal care management of patients with mild and moderate haemophilia.
Authors: Alban Fouasson-Chailloux; Fabien Leboeuf; Yves Maugars; Marc Trossaert; Pierre Menu; François Rannou; Claire Vinatier; Jérome Guicheux; Raphael Gross; Marc Dauty Journal: Int J Environ Res Public Health Date: 2022-06-20 Impact factor: 4.614
Authors: Mairead O'Donovan; Eimear Quinn; Kate Johnston; Evelyn Singleton; Julie Benson; Brian O'Mahony; Declan Noone; Cleona Duggan; Ruth Gilmore; Kevin Ryan; James S O'Donnell; Niamh M O'Connell; Johnny Mahlangu Journal: Res Pract Thromb Haemost Date: 2021-10-11
Authors: Erik Berntorp; Petra LeBeau; Margaret V Ragni; Munira Borhany; Yasmina L Abajas; Michael D Tarantino; Katharina Holstein; Stacy E Croteau; Raina Liesner; Cristina Tarango; Manuela Carvalho; Catherine McGuinn; Eva Funding; Christine L Kempton; Christoph Bidlingmaier; Alice Cohen; Johannes Oldenburg; Susan Kearney; Christine Knoll; Philip Kuriakose; Suchitra Acharya; Ulrike M Reiss; Roshni Kulkarni; Michelle Witkop; Stefan Lethagen; Rebecca Krouse; Amy D Shapiro; Jan Astermark Journal: Haemophilia Date: 2022-03-08 Impact factor: 4.263