Evidence map›Paper›PMID 40874532›Full record

Observational studyHaemophilia : the official journal of the World Federation of Hemophilia2025

Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the Canadian Bleeding Disorders Registry (CBDR) and Comparison of Data From the Two Sources.

Federico Germini, Carlo Cossa, Elisabetta Trinari, Emma Iserman, Quazi Ibrahim, Drashti Pete, Arun Keepanasseril, David Page, Mark W Skinner, Alfonso Iorio

Abstract readComparative StudyObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Haemophilia : the official journal of the World Federation of Hemophilia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Federico GerminiDepartment of Medicine, Division of Hematology & Thromboembolism, and Health Information Research Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.
Carlo CossaHumanitas University, Pieve Emanuele, Milan, Italy.ORCID https://orcid.org/0009-0003-6114-1034
Elisabetta TrinariDivision of Developmental Pediatrics, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
Emma IsermanDepartment of Health Evidence, Research, and Impact (HEI), Health Research Information Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.
Quazi IbrahimDepartment of Health Evidence, Research, and Impact (HEI), Health Research Information Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.
Drashti PeteDepartment of Health Evidence, Research, and Impact (HEI), Health Research Information Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.
Arun KeepanasserilDepartment of Health Evidence, Research, and Impact (HEI), Health Research Information Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.ORCID https://orcid.org/0000-0003-0733-9616
David PageCanadian Hemophilia Society, Montreal, Québec, Canada.ORCID https://orcid.org/0000-0001-5009-260X
Mark W SkinnerDepartment of Health Evidence, Research, and Impact (HEI), Health Research Information Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.ORCID https://orcid.org/0000-0002-0934-0680
Alfonso IorioDepartment of Medicine, Division of Hematology & Thromboembolism, and Health Information Research Unit (HIRU), McMaster University, Hamilton, Ontario, Canada.ORCID https://orcid.org/0000-0002-3331-8766

Funding

Roche
6 · The paper itself

Abstract

introductionThe 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.

aimOur objectives were to assess the feasibility of collecting PROBE data through CBDR and to compare the data collected from these two sources.

methodsWe 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.

resultsA 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).

conclusionThe 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.

Indexed as

Hemophilia APatient Reported Outcome MeasuresRegistriesAdolescentAdultCanadaFeasibility StudiesFemaleHumansMaleMiddle AgedProspective StudiesQuality of LifeSurveys and QuestionnairesYoung AdultCBDRhaemophiliapatient‐reported outcomesPROPROBEroutine data collection

Identifiers

PMID40874532
PMCPMC12612359

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.