Tag: 2021

Education Levels in People with Hemophilia – Insights from the PROBE Study

Kucher A, Noone D, Chai-Adisaksopha C, Curtis R, Frick N, Iorio A, Nichol M, O’Mahony B, Page D, Skinner M, Stonebraker J. Education in people with Hemophilia – Insights from the PROBE Study. Abstracts MTD-PP-045 (548). Haemophilia. 2020;26(S4):3-140. https://doi.org/10.1111/hae.13941 Introduction Education is one of the key components relating to quality of life. The aim of… Continue reading Education Levels in People with Hemophilia – Insights from the PROBE Study

Relationship of PROBE Pain Domain and EQ-5D: Insights from the PROBE study

Skinner M, Noone D, Curtis R, Frick N, Germini F, Kucher A, Nichol M, O’Mahony B, Page D, Stonebraker J, Iorio A. P-019 (1035680) Relationship of EQ-5D Pain Domain and Bleeds – Insights from the PROBE Study. (2021), ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385 Introduction Bleeding in people living with haemophilia (PWH) has a significant impact on Health-Related Quality of Life (HRQoL). This impact has… Continue reading Relationship of PROBE Pain Domain and EQ-5D: Insights from the PROBE study

Aging and health status in persons leaving with hemophilia and controls without a bleeding disorder

Germini F, O’Callaghan S, Chai-Adisaksopha R, Curtis R, Frick N, Nichol M, Noone D, O’Mahony B, Page D, Stonebraker J, Skinner M, Iorio A. Aging and health status in persons leaving with hemophilia and controls without a bleeding disorder. Abstract (20). NHF 2022. Objective People with hemophilia (PWH) have a life expectancy disadvantage as compared… Continue reading Aging and health status in persons leaving with hemophilia and controls without a bleeding disorder

Exploring the Quality Of Life And Self‐Reported Outcomes Of Patients With Hemophilia A In A Cross‐Sectional Study In Colombia

Franco J-S, Torres L, Peñuela O, Forero MDR, Rivera M, Vizcaya D. Exploring the Quality Of Life And Self‐Reported Outcomes Of Patients With Hemophilia A In A Cross‐Sectional Study In Colombia. Abstract 110. Haemophilia, 2021;27(S2):18-181. https://doi.org/10.1111/hae.14236 Introduction Collecting and interpreting patient‐reported outcomes in Hemophilia A supports the understanding of patients’ perspec‐tives on the burden of… Continue reading Exploring the Quality Of Life And Self‐Reported Outcomes Of Patients With Hemophilia A In A Cross‐Sectional Study In Colombia

Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia

Vizcaya D, Torres L, Peñuela O, Forero MDR, Rivera M, Franco J-S. Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia. Abstract 060. Haemophilia. 2021;27(S2):18-181. https://doi.org/10.1111/hae.14236 Introduction Patient-reported outcomes are useful to optimize care of persons with hemophilia, but little is known of the differences between adult and children reported… Continue reading Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia

Assessment of quality of life of patients in Kyrgyzstan using the PROBE tool

Vizcaya D, Torres L, Peñuela O, Forero MDR, Rivera M, Franco J-S. Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia Tool. Abstract 060. Haemophilia. 2021;27(S2):18-181. https://doi.org/10.1111/hae.14236 Introduction In resource constrained countries such as the Kyrgyz Republic, there is very limited availability of clotting factor concentrates which has a determinantal… Continue reading Assessment of quality of life of patients in Kyrgyzstan using the PROBE tool

Incorporating Patient Reported Outcomes into Clinical Practice: a 360-degree Clinical Evaluation for Better Care and Treatment of People with Hemophilia through myWBDR and myPROBE

Youttananukorn T, Coffin D, Diop S, Hermans C, Konkle B, Lambert C, Noone D, O’Hara J, Pierce G, W Skinner M, Iorio A. Incorporating Patient Reported Outcomes into Clinical Practice: A 360-degree Clinical Evaluation for Better Care and Treatment of People with Hemophilia through myWBDR and myPROBE [abstract]. Res Pract Thromb Haemost. 2021;5(Suppl 2). https://abstracts.isth.org/abstract/incorporating-patient-reported-outcomes-into-clinical-practice-a-360-degree-clinical-evaluation-for-better-care-and-treatment-of-people-with-hemophilia-through-mywbdr-and-myprobe/.… Continue reading Incorporating Patient Reported Outcomes into Clinical Practice: a 360-degree Clinical Evaluation for Better Care and Treatment of People with Hemophilia through myWBDR and myPROBE

Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia

Jackson S, Sheridan B, Gue D, Lyons S, Waines R, Ireland T, Pete D, Iorio A, Walsh L, Skinner M, Germini F. Feasibility of Integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a Clinical Care Pathway to Facilitate Transformation to a Value-based Health Care Model in Hemophilia [abstract]. Res Pract Thromb Haemost. 2021;5(Suppl 2). https://abstracts.isth.org/abstract/feasibility-of-integrating-probe-patient-reported-outcomes-burdens-and-experiences-into-a-clinical-care-pathway-to-facilitate-transformation-to-a-value-based-health-care-model-in-hemophilia/… Continue reading Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia

Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set

van Balen EC, O’Mahony B, Cnossen MH, Dolan G, Blanchette VS, Fischer K, Gue D, O’Hara J, Iorio A, Jackson S, Konkle BA, Nugent DJ, Coffin D,  Skinner MW,  Smit C, Srivastava A, van Eenennaam F, van der Bom JG, Gouw SC. Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set.… Continue reading Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set