Evidence map›Paper›PMID 34245088›Full record

ArticleJournal of thrombosis and haemostasis : JTH2021

Validation of PROMIS Profile-29 in adults with hemophilia in the Netherlands.

Erna C van Balen, Lotte Haverman, Shermarke Hassan, Elisabeth M Taal, Cees Smit, Mariëtte H Driessens, Erik A M Beckers, Michiel Coppens, Jeroen Eikenboom, Hélène L Hooimeijer and 7 more

Abstract read
In one paragraph

Article in Journal of thrombosis and haemostasis : JTH, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.

0numbers the graph read from it
0cells of the map it votes in
19citing 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

19 citing papers in PubMed.

  1. Article
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  9. Patient-reported data on the severity of Von Willebrand disease.Haemophilia : the official journal of the World Federation of Hemophilia · 2024
    Article
  10. Article
  11. Article
  12. Hungarian PROMIS-29+2: psychometric properties and population reference values.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
    Article
  13. Article
  14. Validity and reliability of the Patient-Reported Outcomes Measurement Information System (PROMIS®) using computerized adaptive testing in patients with advanced chronic kidney disease.Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association · 2023
    Article
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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

17 authors.

Erna C van BalenDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0002-3678-6581
Lotte HavermanChild and Adolescent Psychiatry & Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0001-7849-0562
Shermarke HassanDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Elisabeth M TaalDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Cees SmitDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Mariëtte H DriessensNetherlands Hemophilia Society, Nijkerk, The Netherlands.ORCID 0000-0001-7423-8538
Erik A M BeckersDepartment of Hematology, Maastricht University Medical Centre, Maastricht, The Netherlands.
Michiel CoppensDepartment of Vascular Medicine, Amsterdam Cardiovascular Sciences, Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0001-6891-9062
Jeroen EikenboomDepartment of Internal Medicine, Division of Thrombosis and Hemostasis, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0002-3268-5759
Hélène L HooimeijerDepartment of Paediatrics, University Medical Center Groningen, Groningen, The Netherlands.
Frank W G LeebeekDepartment of Hematology, Erasmus MC, Rotterdam, The Netherlands.ORCID 0000-0001-5677-1371
Lize F D van VulpenDepartment of Benign Hematology, Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.ORCID 0000-0003-3242-5524
Saskia E M ScholsDepartment of Hematology, Radboud University Medical Center, Nijmegen, the Netherlands.ORCID 0000-0003-2423-2829
Caroline B TerweeDepartment of Epidemiology and Data Science, Amsterdam Public Health Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands.ORCID 0000-0003-4570-2826
Frits R RosendaalDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0003-2558-7496
Johanna G van der BomDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0001-9095-2475
Samantha C GouwDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0002-1957-4122

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe Patient-Reported Outcomes Measurement Information System (PROMIS) Profile-29 questionnaire is widely used worldwide, but it has not yet been validated in the Netherlands, nor in persons with hemophilia.

objectiveTo validate the Dutch-Flemish version of the PROMIS-29 Profile v2.01 in adults with hemophilia.

methodsDutch males with hemophilia (all severities) completed questionnaires that contained sociodemographic and clinical characteristics, the PROMIS-29, RAND-36, and the Hemophilia Activities List (HAL). Structural validity of each subscale was assessed with confirmatory factor analysis (CFA). Internal consistency was calculated for each subscale with sufficient model fit in CFA. Construct validity was assessed by testing hypotheses about (1) correlations of each PROMIS-29 subscale with corresponding scales of RAND-36 and domains of HAL, and (2) mean differences in T-scores between subgroups with different hemophilia severities, self-reported joint impairment, and HIV infection status. We considered ≥75% of data in accordance with the hypotheses evidence for construct validity.

resultsIn total, 770 persons with hemophilia participated in this cross-sectional study. CFA revealed sufficient structural validity for five subscales: Physical Function, Depression, Sleep Disturbance, Ability to Participate in Social Roles and Activities, and Pain Interference. Internal consistency was high and Cronbach's alpha ranged from 0.79 for Sleep Disturbance to 0.96 for Pain Interference. Differences between clinical subgroups were in the expected direction. Construct validity was confirmed for Physical Function, Anxiety, Depression, Fatigue, Sleep Disturbance, and Pain Intensity.

conclusionThis study revealed sufficient evidence for structural validity, internal consistency, and construct validity for most PROMIS Profile-29 subscales among people with hemophilia in the Netherlands.

Indexed as

Hemophilia AHIV InfectionsAdultCross-Sectional StudiesHumansMaleNetherlandsQuality of LifeReproducibility of ResultsSurveys and Questionnaireshemophilia Ahemophilia Bpatient reported outcome measuressurveys and questionnairesvalidation study

Identifiers

PMID34245088
PMCPMC8596807

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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.