Evidence map›Paper›PMID 36508315›Full record

ArticleHaemophilia : the official journal of the World Federation of Hemophilia2023

ACTIVLIM-Hemo: A new self-reported, unidimensional and linear measure of activity limitations in persons with haemophilia.

Sébastien Lobet, Catherine Lambert, Anthe Foubert, Valérie-Anne Chantrain, Nathalie Roussel, Mira Meeus, Ann Devos, Philip Maes, Cedric Hermans, Massimo Penta

Open access · hybridAbstract read
In one paragraph

Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.3field-weighted citation impact, top 18% of its field
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

3 citing papers in PubMed, 9 citations in OpenAlex.

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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

10 authors at 4 institutions in 1 country.

Sébastien LobetHaemostasis and Thrombosis Unit, Division of Hematology, Clinique Universitaires Saint-Luc, Université Catholique de Louvain (UCLouvain), Brussels, Belgium.ORCID https://orcid.org/0000-0002-3829-6850
Catherine LambertHaemostasis and Thrombosis Unit, Division of Hematology, Clinique Universitaires Saint-Luc, Université Catholique de Louvain (UCLouvain), Brussels, Belgium.ORCID https://orcid.org/0000-0003-2222-0357
Anthe FoubertResearch Group MOVANT, Department of Rehabilitation Sciences and Physiotherapy (REVAKI), University of Antwerp, Wilrijk, Belgium.ORCID https://orcid.org/0000-0002-2514-9026
Valérie-Anne ChantrainResearch Group MOVANT, Department of Rehabilitation Sciences and Physiotherapy (REVAKI), University of Antwerp, Wilrijk, Belgium.ORCID https://orcid.org/0000-0002-2044-7112
Nathalie RousselResearch Group MOVANT, Department of Rehabilitation Sciences and Physiotherapy (REVAKI), University of Antwerp, Wilrijk, Belgium.ORCID https://orcid.org/0000-0002-7409-878X
Mira MeeusResearch Group MOVANT, Department of Rehabilitation Sciences and Physiotherapy (REVAKI), University of Antwerp, Wilrijk, Belgium.ORCID https://orcid.org/0000-0002-2022-5114
Ann DevosHemostasis and Thrombosis Unit, Division of Pediatric Hematology, University Hospital Antwerp, Antwerp, Belgium.
Philip MaesHemostasis and Thrombosis Unit, Division of Pediatric Hematology, University Hospital Antwerp, Antwerp, Belgium.
Cedric HermansHaemostasis and Thrombosis Unit, Division of Hematology, Clinique Universitaires Saint-Luc, Université Catholique de Louvain (UCLouvain), Brussels, Belgium.ORCID https://orcid.org/0000-0001-5429-8437
Massimo PentaInstitute of Neuroscience, Université catholique de Louvain, Louvain-la-Neuve, Belgium.ORCID https://orcid.org/0000-0002-0355-8638
University of Antwerp · BECliniques Universitaires Saint-Luc · BEAntwerp University Hospital · BEUCLouvain · BE

Funding

Pfizer Inc. 55563735
6 · The paper itself

Abstract

introductionTo assess activity limitations in people with haemophilia (PwH), the self-reported Haemophilia Activity List (HAL) is widely employed, despite several methodological limitations impacting the interpretation of categorical scores. Modern psychometric approaches avoid these limitations by using a probabilistic model, such as the Rasch model. The ACTIVLIM is a Rasch-built measurement of activity limitations previously validated in several clinical conditions like neuromuscular disorders.

aimsThis study sought to develop the ACTIVLIM-Hemo, meaning an ACTIVLIM scale version specifically adapted to assess daily activity limitations in adult PwH.

methodsDaily activities were assessed as "impossible," "difficult" or "easy" by 114 PwH (median age of 44 years) with 63 of them reassessed after 12 days. The Rasch Rating Scale model was used to identify activities delineating a unidimensional and linear scale unbiased by demographic and clinical status. Concurrent validity was determined through correlation with the HAL sub-scores and sum score.

resultsThe ACTIVLIM-Hemo included 22 pertinent activities, with difficulties independent of demographic and clinical conditions, allowing a reliable measure of activity limitations (PSI = .92) expressed on a linear and unidimensional scale in PwH (7%-100 % range, ceiling effect of 1/114) with excellent test-retest reliability (ICC = .978). Spearman rank correlations between ACTIVLIM-Hemo and HAL sub-scores ranged between .623 and .869.

conclusionsThe ACTIVLIM-Hemo is an easy-to-administer, valid and reliable alternative to HAL in assessing activity limitations in PwH. Its invariant scale can be used across conditions and time to compare the functional status of PwH over a wide measurement range.

Indexed as

Hemophilia AActivities of Daily LivingAdultHumansReproducibility of ResultsSelf ReportSurveys and Questionnairesbleeding disorder, disability and healthhaemophilia, International Classification of Functioning (ICF), outcome assessment, questionnaire, rash analysis, scale

Identifiers

PMID36508315
PMCPMC10107861
OpenAlexW4311201473

What OpenQuestion holds

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LicenceCC BY-NC
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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.