Evidence map›Paper›PMID 42219951›Full record

ArticleHaemophilia : the official journal of the World Federation of Hemophilia

Responsiveness and Minimal Important Change of the Haemophilia Activities List in Patients With Inherited Bleeding Disorders.

Johan Blokzijl, Isolde A R Kuijlaars, Martijn F Pisters, Cindy Veenhof, Janjaap van der Net, Roger E G Schutgens, Kathelijn Fischer, Merel A Timmer

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Article in Haemophilia : the official journal of the World Federation of Hemophilia. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

8 authors.

Johan BlokzijlCentre For Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Ultrecht, the Netherlands.
Isolde A R KuijlaarsCentre For Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Ultrecht, the Netherlands.
Martijn F PistersPhysical Therapy Research, Department of Rehabilitation, Physiotherapy Science and Sport, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht, the Netherlands.
Cindy VeenhofPhysical Therapy Research, Department of Rehabilitation, Physiotherapy Science and Sport, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht, the Netherlands.
Janjaap van der NetCenter For Child Development, Exercise and Physical Literacy, University Medical Center Utrecht, Utrecht University, University Children's Hospital, Utrecht, the Netherlands.
Roger E G SchutgensCentre For Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Ultrecht, the Netherlands.
Kathelijn FischerCentre For Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Ultrecht, the Netherlands.
Merel A TimmerCentre For Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Ultrecht, the Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionThe Haemophilia Activities List (HAL) is a disease-specific patient-reported outcome measure (PROM) that is widely used in both healthcare and research in people with inherited bleeding disorders (PWBD), but information on responsiveness and minimal important change (MIC) is lacking.

aimThe aim of this study is to determine the responsiveness and MIC of the HAL to measure self-reported limitations in activities in PWBD.

methodsPWBD on the waiting list for orthopaedic surgery were invited to participate. Participants completed the HAL, reference PROMs regarding pain, physical functioning and ADL activities at baseline, 3 months and 12 months after surgery. The general perceived effect was completed at 3 and 12 months after surgery.

resultsA total of 32 surgeries performed in 28 participants were included. Three months after surgery the change of the HAL sum score showed moderate to strong correlation with the change on the physical functioning PROMs (r: 0.56) and the change on the ADL PROMs (r: 0.65) and weak correlation with pain scores. The HAL was well able to discriminate participants that improved in self-reported limitations in activities and participation from those that did not improve (AUC: 0.86 (95%CI: 0.71-1.0)). The MIC

conclusionAs the MIC is smaller than the smallest detectable change (SDC) of the HAL, it can be assumed that if a person has improved or deteriorated more than the known SDC of 10.2 (previous research), they are likely to experience a meaningful change over time.

Indexed as

Blood Coagulation Disorders, InheritedHemophilia AActivities of Daily LivingAdolescentAdultFemaleHumansMaleMiddle AgedPatient Reported Outcome MeasuresYoung Adultactivities of daily livinghaemophiliaminimal important change (MIC)patient‐reported outcomes measures (PROMs)responsiveness

Identifiers

PMID42219951
PMCPMC13551243

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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.