Abstracts
International Society on Thrombosis & Haemophilia (ISTH, SSC) 2019
Oral Presentation Abstract # OC 42.4
PATIENT REPORTED OUTCOME DATA ON SWITCH FROM STANDARD TO EXTENDED HALF LIFE IN IRISH ADULTS WITH HAEMOPHILIA
Citation: B. O'Mahony, A. Pastarnak, D. Noone, M. Skinner, Patient Reported Outcomes Burdens and Experiences Study Group, International Society on Thrombosis & Haemophilia (ISTH, SSC) 2019. Abstract # OC 42.4. Abstracts, research and practice in thrombosis and Haemostasis, doi: 10.1002/rth2.12227
For Abstract in press Click HERE (OC 42.4)
Oral Presentation Abstract # OC 32.4
HEALTH STATUS OF PEOPLE LIVING WITH NON-SEVERE HEMOPHILIA - INSIGHTS FROM THE PATIENT REPORTED OUTCOMES, BURDENS AND EXPERIENCES (PROBE) STUDY
Citation: C. Chai‐Adisaksopha, M. Skinner, D. Page, J. Stonebraker, D. Noone, R. Curtis, N. Frick, M. Nichol, B. O'Mahony, A. Iorio, Patient Reported Outcomes Burdens and Experiences Study Group, International Society on Thrombosis & Haemophilia (ISTH, SSC) 2019. Abstract # OC 32.4. Abstracts, research and practice in thrombosis and Haemostasis, doi: 10.1002/rth2.12227
For Abstract in press Click HERE (OC 32.4)
Poster Abstract # PB1412
VALIDATION OF THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY QUESTIONNAIRE
Citation: M. Skinner, C. Chai‐Adisaksopha, B. O'Mahony, D. Noone, R. Curtis, N. Frick, M. Nichol, D. Page, J. Stonebraker, A. Iorio, Patient Reported Outcomes Burdens and Experiences Study Group, International Society on Thrombosis & Haemophilia (ISTH, SSC) 2019. Abstract # OC 32.4. Abstracts, research and practice in thrombosis and Haemostasis, doi: 10.1002/rth2.12229
For Abstract in press Click HERE (PB1412)
European Association for Haemophilia and Allied Disorders (EAHAD) 2019
Abstract #EAHAD18-ABS-1208
IMPACT OF ACUTE AND CHRONIC PAIN ON THE EQ-5D: INSIGHTS FROM THE PROBE STUDY
Citation: Declan Noone, Chatree Chai-Adisaksopha, Randall Curtis, Neil Frick, Michael Nichol, Brian O'Mahony, David Page, Alexandra Pastarnak, Jeff Stonebraker, Alfonso Iorio, Mark Skinner, on behalf of Patient Reported Outcomes Burdens and Experiences (PROBE) Investigator Group, Impact of acute and chronic pain on EQ-5D: insights from PROBE study, (2019), Poster Presentations. Haemophilia, 25: 35-188. doi:10.1111/hae.13666
For Abstract Click: HERE (P079)
Abstract #EAHAD18-ABS-1231
PREDICTORS FOR ACUTE AND CHRONIC PAIN IN PATIENTS WITH SEVERE HAEMOPHILIA IN THE PROBE COHORT
Citation: Declan Noone, Chatree Chai-Adisaksopha, Randall Curtis, Neil Frick, Michael Nichol, Brian O'Mahony, David Page, Alexandra Pastarnak, Jeff Stonebraker, Alfonso Iorio, Mark Skinner, on behalf of Patient Reported Outcomes Burdens and Experiences (PROBE) Investigator Group, Predictors for acute and chronic pain in patients with haemophilia in the PROBE cohort, (2019), Poster Presentations. Haemophilia, 25: 35-188. doi:10.1111/hae.13666
For Abstract Click: HERE (P080)
Abstract #EAHAD18-ABS-1125
PART-TIME EMPLOYMENT AND EARLY RETIREMENT IN PEOPLE WITH SEVERE HAEMOPHILIA: INSIGHTS FROM THE PROBE STUDY
Citation: Mark W. Skinner, Chatree Chai-Adisaksopha, Declan Noone, Randall Curtis, Neil Frick, Michael Nichol, BrianO'Mahony, David Page, Alexandra Pastarnak, Jeff Stonebraker, Alfonso Iorio and the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Investigator Group, Part-time employment and early retirement in people with haemophilia: insights from the PROBE study, (2019), Poster Presentations. Haemophilia, 25: 35-188. doi:10.1111/hae.13666
For Abstract Click: HERE (P204)
Posters and Oral Presentations
International Society on Thrombosis & Haemophilia (ISTH, SSC) 2019
Poster # PB1412
VALIDATION OF THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY QUESTIONNAIRE
Citation: M. Skinner, C. Chai‐Adisaksopha, B. O'Mahony, D. Noone, R. Curtis, N. Frick, M. Nichol, D. Page, J. Stonebraker, A. Iorio, Patient Reported Outcomes Burdens and Experiences Study Group, International Society on Thrombosis & Haemophilia (ISTH, SSC) 2019. Abstract # OC 32.4. Abstracts, research and practice in thrombosis and Haemostasis, doi: 10.1002/rth2.12229
European Association for Haemophilia and Allied Disorders (EAHAD) 2019
Poster #EAHAD18-ABS-1208
IMPACT OF ACUTE AND CHRONIC PAIN ON THE EQ-5D: INSIGHTS FROM THE PROBE STUDY
Citation: Declan Noone, Chatree Chai-Adisaksopha, Randall Curtis, Neil Frick, Michael Nichol, Brian O'Mahony, David Page, Alexandra Pastarnak, Jeff Stonebraker, Alfonso Iorio, Mark Skinner, on behalf of Patient Reported Outcomes Burdens and Experiences (PROBE) Investigator Group, Impact of acute and chronic pain on EQ-5D: insights from PROBE study, (2019), Poster Presentations. Haemophilia, 25: 35-188. doi:10.1111/hae.13666
Poster #EAHAD18-ABS-1231
PREDICTORS FOR ACUTE AND CHRONIC PAIN IN PATIENTS WITH SEVERE HAEMOPHILIA IN THE PROBE COHORT
Citation: Declan Noone, Chatree Chai-Adisaksopha, Randall Curtis, Neil Frick, Michael Nichol, Brian O'Mahony, David Page, Alexandra Pastarnak, Jeff Stonebraker, Alfonso Iorio, Mark Skinner, on behalf of Patient Reported Outcomes Burdens and Experiences (PROBE) Investigator Group, Predictors for acute and chronic pain in patients with haemophilia in the PROBE cohort, (2019), Poster Presentations. Haemophilia, 25: 35-188. doi:10.1111/hae.13666
Poster #EAHAD18-ABS-1125
PART-TIME EMPLOYMENT AND EARLY RETIREMENT IN PEOPLE WITH SEVERE HAEMOPHILIA: INSIGHTS FROM THE PROBE STUDY
Citation: Mark W. Skinner, Chatree Chai-Adisaksopha, Declan Noone, Randall Curtis, Neil Frick, Michael Nichol, BrianO'Mahony, David Page, Alexandra Pastarnak, Jeff Stonebraker, Alfonso Iorio and the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Investigator Group, Part-time employment and early retirement in people with haemophilia: insights from the PROBE study, (2019), Poster Presentations. Haemophilia, 25: 35-188. doi:10.1111/hae.13666
Other Publications
Exploring regional variations in the cross‐cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study
Abstract
Background
The Patient Reported Outcomes Burdens and Experience (PROBE) study has developed and validated the PROBE questionnaire for assessing patient‐reported outcomes in people with haemophilia and participants without bleeding disorders.
Objective
To explore the regional variations in the international implementation of the PROBE questionnaire.
Methods
Data were collected from participants in four regions (Western Pacific, South America, North America and Europe). Participants were able to choose English or translated versions of the PROBE questionnaire into their first language. We used analysis of variance methods and multivariable regression to determine the relative contribution of the variance explained by region controlling for haemophilia diagnosis, age group and levels of educations. We also explored interactions between region and the other components.
Results
We used 862 questionnaires from 14 countries. Mean age of participants was 40.03 years (standard deviation 13.89), and 73.67% were male. After adjusting, region contributed 0.44%‐7.98% of the variance component in subitem scores and 0.26% in the PROBE score. Years of education contributed 0.34% in the PROBE score. Age and haemophilia diagnosis contributed 3.42% and 22.42% of the PROBE score.
Conclusions
The results demonstrate that the PROBE questionnaire is valid to implement for assessing health status among patients with haemophilia and participants without bleeding disorders across regions.
