Psychometric Properties of the Patient Reported Outcomes Burdens and Experiences (PROBE) Questionnaire
Bibliographic record
Abstract
Objective:To assess the psychometric properties of The Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire. Methods: This study was a cross-sectional, multi-national study. Participants were enrolled if they were 10 years or older and patients with hemophilia A or B or people without bleeding disorder. Participants were invited through non-governmental hemophilia patient organizations in 17 countries between 04/08/2015 and 12/28/2015, and completed the PROBE questionnaire. The following psychometric properties: item responses, missing data, floor and ceiling effects, exploratory factor analysis, and internal consistency reliability were examined. A PROBE Score was derived and assessed for its convergent and known groups validity. Results: The study enrolled a total of 677 participants with median age of 40.0 (interquartile range 26.0 to 54.5) years, 71.9% male. Missing data was up to 2.5% for the section concerning patient reported outcomes (PROs). More than 15% of participants presented floor effect for all items but two, and a ceiling effect for two items. Factor analysis identified three factors explaining the majority of the variance. Cronbach9s alpha coefficient indicated good internal consistency reliability (0.83). PROBE items showed moderate to strong correlations with corresponding EQ-5D-5L domains. The PROBE Score has a strong correlation (r=0.72) with EQ-5D-5L utility index score. The PROBE Score has a discriminative validity among known groups. Conclusions: The results of this study suggest that PROBE is a valid questionnaire for evaluating PROs in people with hemophilia, as well as control population. The discriminative property of PROBE will allow its use in future clinical trials, longitudinal studies, health technology assessment studies, routine clinical care or registries. Disclosures Skinner: Baxalta, now part of Shire; Bayer; Bioverativ; CSL; Novo Nordisk, Roche and Sobi with administrative support provided by the US National Hemophilia Foundation: Research Funding; US National Hemophilia Foundation: Other: non-financial support ; US National Hemophilia Foundation: Other: non-financial support ; Baxalta, now part of Shire; Bayer; Bioverativ; CSL; Novo Nordisk, Roche and Sobi with administrative support provided by the US National Hemophilia Foundation: Research Funding. Curtis: Bioverativ: Research Funding; Bayer: Research Funding, Speakers Bureau; Baxter: Research Funding; CSL Behring: Research Funding; Gilead: Honoraria; Genentech: Honoraria, Research Funding; Novo Nordisk: Honoraria, Research Funding; Pfizer: Research Funding. Nichol: Bioverativ: Consultancy, Research Funding; Baxter: Research Funding; Genentech: Research Funding; Pfizer: Research Funding; Bayer: Research Funding; Novo Nordisk: Research Funding; CSL Behring: Research Funding; Merck: Consultancy. Noone: Baxalta, now part of Shire; Bayer; Bioverativ; CSL; Novo Nordisk, Roche and Sobi with administrative support provided by the US National Hemophilia Foundation: Research Funding. O9Mahony: US National Hemophilia Foundation: Other: non-financial support.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.008 | 0.019 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".