Related Experiment Video
Updated: Sep 9, 2025
E-Patient Counseling Trial E-PACO: Computer Based Education versus Nurse Counseling for Patients to Prepare for Colonoscopy
Published on: August 1, 2019
Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the
Federico Germini1,2, Carlo Cossa3, Elisabetta Trinari4
1Department of Medicine, Division of Hematology & Thromboembolism, and Health Information Research Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.
Insights
Integrating the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire with the Canadian Bleeding Disorders Registry (CBDR) is feasible. This approach ensures reliable collection of patient-reported outcomes for improved care in haemophilia.
Area of Science:
- Medical Informatics
- Patient-Reported Outcomes
- Haemophilia Research
Background:
- The Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire measures quality of life in persons with haemophilia (PWH).
- Integration with the Canadian Bleeding Disorders Registry (CBDR) allows for comparison of patient-reported data and clinical data.
- This presents an opportunity to evaluate data consistency and feasibility of routine collection.
Purpose of the Study:
- To assess the feasibility of collecting PROBE data via the CBDR platform.
- To compare data collected through patient self-reporting (PROBE) versus clinical data within the CBDR.
Main Methods:
- A prospective observational study involving PWH using the MyCBDR platform.
- Digital completion of the PROBE questionnaire at baseline, 6, and 12 months.
- Comparison of PROBE and CBDR data using Kappa agreement, ICC, and Pearson correlation.
Main Results:
- 142 PWH participated, with recruitment ratios of 21.1% and 12.0%.
- Retention rates were 40.8% at 6 months and 32.4% at 12 months.
- Good to very good agreement (κ > 0.75) or strong correlation was observed, except for inhibitor history, recent bleeds, and treatment regimen.
Conclusions:
- The integration of PROBE with CBDR is feasible for routine patient-reported outcome data collection.
- PROBE demonstrates reliability as a tool for capturing patient experiences in haemophilia care.
- This integration can enhance data quality, leading to more personalized and patient-centered care.
Introduction:
The Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire can be used to measure quality of life in persons with haemophilia (PWH) and is integrated in the Canadian Bleeding Disorders Registry (CBDR). This offers the opportunity to compare the same data inputted by patients in PROBE and their treating team in CBDR.
Aim:
Our objectives were to assess the feasibility of collecting PROBE data through CBDR and to compare the data collected from these two sources.
Methods:
We conducted a prospective observational study among PWH using MyCBDR. Participants were invited to digitally complete the PROBE questionnaire at baseline and to repeat it at 6 and 12 months. Additional data were passively collected through CBDR. Data from PROBE and CBDR were compared using Kappa agreement, intraclass correlation (ICC) and Pearson correlation.
Results:
A total of 142 PWH participated. Recruitment ratios were 21.1% and 12.0% for the two phases. Retention rates were 40.8% at 6 months and 32.4% at 12 months. Three hundred thirteen subjects were involved in the comparison between PROBE and CBDR data. The agreement was good to very good (κ > 0.75) or the correlation very strong, with the exception of the history of inhibitor (κ = 0.57), recent bleeds (κ = 0.48) and current treatment regimen (κ = 0.57).
Conclusion:
The integration of PROBE with CBDR is feasible and PROBE is a reliable tool for routine PRO data collection. Its use in clinical practice may improve data quality and personalized and patient-centred care.
More Related Videos
14:45Enumeration of Major Peripheral Blood Leukocyte Populations for Multicenter Clinical Trials Using a Whole Blood Phenotyping Assay
Published on: September 16, 2012
06:55Inverse Probability of Treatment Weighting Propensity Score using the Military Health System Data Repository and National Death Index
Published on: January 8, 2020
Related Concept Videos
01:23Methods of Documentation V: CBE
In CBE, healthcare professionals establish predefined standards of practice that define what constitutes...
01:23Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches
Non-controlled studies, commonly employed for initial exploration, lack a control group, rendering them susceptible to biases and external influences. In contrast,...