ArticleBMJ open2018
Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire.
Article in BMJ open, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02439710 (Patient Reported Outcomes Burdens and Experiences - Phase 2 - Pilot Feasibility Study), which is not on this map. Cited by 10 papers.
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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.
Patient Reported Outcomes Burdens and Experiences - Phase 2 - Pilot Feasibility Study
Who cites it
10 citing papers in PubMed.
- 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.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Observational
- Emicizumab in Severe Hemophilia A: Clinical and Patient Determinants of Transition Within a Standardized Program.Journal of hematology · 2025Article
- Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science.Expert review of hematology · 2023Article
- Long-term prophylaxis: what are our options and how to define success?Hematology. American Society of Hematology. Education Program · 2022Review
- Pain and functional disability amongst adults with moderate and severe haemophilia from the Irish personalised approach to the treatment of haemophilia (iPATH) study.European journal of haematology · 2022Article
- User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study.JMIR human factors · 2022Article
- Recombinant factor IX-Fc fusion protein in severe hemophilia B: Patient-reported outcomes and health-related quality of life.Research and practice in thrombosis and haemostasis · 2021Article
- Patient-relevant health outcomes for hemophilia care: Development of an international standard outcomes set.Research and practice in thrombosis and haemostasis · 2021Article
- How to discuss gene therapy for haemophilia? A patient and physician perspective.Haemophilia : the official journal of the World Federation of Hemophilia · 2019Review
- Hemophilia trials in the twenty-first century: Defining patient important outcomes.Research and practice in thrombosis and haemostasis · 2019Review
Corrections and comments
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Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo assess the psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire.
methodsThis study was a cross-sectional, multinational study. Participants were enrolled if they were more than 10 years old and people with haemophilia A or B or people without a bleeding disorder. Participants were invited through non-governmental patient organisations in 21 countries between 01/27/2016 and 02/23/2017. The following psychometric properties: 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.
resultsThe study analysed the data on 916 participants with median age of 37.0 (IQR 27.0 to 48.0) years, 74.8% male. In the domain assessing patient-reported outcomes (PROs), more than 15% of participants presented a ceiling effect for all items but two, and a floor effect for one item. Factor analysis identified three factors explaining the majority of the variance. Cronbach's alpha coefficient indicated good internal consistency reliability (0.84). PROBE items showed moderate to strong correlations with corresponding EuroQol five dimension 5-level instrument (EQ-5D-5L) domains. The PROBE Score has a strong correlation (
conclusionsThe results of this study suggest that PROBE is a valid questionnaire for evaluating PROs in people with haemophilia as well as control population. The known-group property of PROBE will allow its use in future clinical trials, longitudinal studies, health technology assessment studies, routine clinical care or registries. Additional studies are needed to test responsiveness and sensitivity to change. TRIAL REGISTRATION NUMBER: NCT02439710; Results.
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