Chai‐Adisaksopha C, Noone D, Curtis R, Frick N, Nichol M, O’Mahony B, Page D, Stonebraker J, Iorio, A, Skinner MW. Exploring Regional Variations in the Cross‐cultural, International Implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) Study. Abstract PB189. Res Pract Thromb Haemost. 2018;2(S1):1-368. https://doi.org/10.1002/rth2.12125
Background
The Patient Reported Outcomes Burdens and Experience (PROBE) study has developed and validated the multilingual PROBE questionnaire for assessing patient reported outcomes in people living with hemophilia (PWH) and participants without bleeding disorders (NOBD). The PROBE questionnaire translations into local languages account for site specific language and cultural peculiarities in the management and life experience of hemophilia.
Aims
To explore the regional variations in the international implementation of the PROBE questionnaire and examine the hypothesis that the PROBE score will not be confounded by cross-cultural aspects.
Methods
Data were collected from participants in four regions (Western Pacific, South America, North America and Europe). Participants were able to select from 23 localized language versions of the PROBE questionnaire based on 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 hemophilia diagnosis, age group and level of education. We also explored interactions between region and the other components.
Results
We analyzed 862 questionnaires from 21 countries. Mean age of participants was 40.03 years (SD 13.89) and 65.20% were PWH and 34.80% were NOBD. After adjusting for hemophilia diagnosis, age group and level of education, region contributed 0.44% to 7.98% of the variance component in sub-item scores and 0.26% in the PROBE score. Years of education contributed 0.34% in the PROBE score. Age and diagnosis (NOBD, mild, moderate, severe) contributed 3.42% and 22.42% of the PROBE score. 70.74% of the variance was explained by inter-individual variation.
Conclusions
Variance partitioning for the PROBE score is similar to that for EQ5D. The results demonstrate that the PROBE questionnaire is valid to implement for assessing health status among PWH and participants without bleeding disorders across regions.
