Publications - 2019

 

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

ISTH2019

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

EAHAD20191208

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

EAHAD20191231

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

EAHAD20191125

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.