ArticleResearch and practice in thrombosis and haemostasis2021
Generic PROMIS item banks in adults with hemophilia for patient-reported outcome assessment: Feasibility, measurement properties, and relevance.
Article in Research and practice in thrombosis and haemostasis, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.
- Measurement properties and interpretability of the PROMIS item banks in stroke patients: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Pooled it
- Psychometric properties and outcomes of the PROMIS Sexual Function and Satisfaction measures in individuals with congenital bleeding disorders.Research and practice in thrombosis and haemostasis · 2026Article
- Observational
- Bleeding disorder of unknown cause: an illustrated review on current practice, knowledge gaps, and future perspectives.Research and practice in thrombosis and haemostasis · 2024Article
- Psychometrics of patient-reported outcomes measurement information system in von Willebrand disease, inherited platelet function disorders, and rare bleeding disorders.Research and practice in thrombosis and haemostasis · 2024Article
- Psychometrics of the patient-reported outcomes measurement information system measures in hemophilia: the applicability of the pediatric item banks.Research and practice in thrombosis and haemostasis · 2023Article
- Article
- Responsiveness and minimal important change of seven PROMIS computerized adaptive tests (CAT) in patients with advanced chronic kidney disease.Journal of patient-reported outcomes · 2023Article
- Validation of the pedHALHaemophilia : the official journal of the World Federation of Hemophilia · 2022Article
- SYMPHONY consortium: Orchestrating personalized treatment for patients with bleeding disorders.Journal of thrombosis and haemostasis : JTH · 2022Article
- Generic PROMIS item banks in adults with hemophilia for patient-reported outcome assessment: Feasibility, measurement properties, and relevance.Research and practice in thrombosis and haemostasis · 2021Article
- A qualitative study on the impact of bleeding disorders on the daily life of Dutch women.Women's health (London, England)Article
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Authors and funding
13 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLegacy hemophilia-specific questionnaires are considered too long, show floor-/ceiling effects, and/or include irrelevant questions. Patient Reported Outcomes Measurement Information System (PROMIS) item banks, including Computer Adaptive Tests (CATs) and short forms, were designed for more efficient outcome assessment.
objectivesEvaluate the feasibility, measurement properties, and relevance of seven PROMIS CATs and two short forms in patients with hemophilia. PATIENTS/
methodsIn this cross-sectional study, Dutch adults with hemophilia completed nine PROMIS item banks electronically. Feasibility was assessed by number of items and floor/ceiling effects. Reliability was determined as the proportion of reliable scores (standard error ≤3.2). Construct validity was assessed by comparison with legacy instruments and expected differences between subgroups. Relevance of item banks was determined by proportions of limited scores.
resultsOverall, 142 of 373 invited patients (mean age, 47 [range, 18-79], 49% severe hemophilia, 46% receiving prophylaxis) responded. Per CAT item bank, mean number of items answered varied from 5 (range, 3-12) to 9 (range, 5-12), with floor effects in pain interference (26% lowest scores) and depression (18% lowest scores). Construct validity and reliability were good for physical function, pain interference, satisfaction with social roles and activities, and fatigue. The CAT physical function showed the most limited scores (38%). The self-efficacy short forms showed ceiling effects (22%-28%) and no relation with the legacy instruments.
conclusionsThe PROMIS CATs physical function, pain interference, satisfaction with social roles and activities, and fatigue are feasible, reliable, and valid alternatives to legacy instruments for patients with hemophilia, with few items and low floor-/ceiling effects.
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