Evidence map›Paper›PMID 36899385›Full record

ArticleJournal of foot and ankle research2023

Decline in health-related quality of life and foot and ankle patient reported outcomes measures in patients with haemophilia and ankle haemarthropathy.

Richard A Wilkins, Heidi J Siddle, Graham J Chapman, Elizabeth Horn, Rebecca Walwyn, Anthony C Redmond

Open access · goldFull text read
In one paragraph

Article in Journal of foot and ankle research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
1.7field-weighted citation impact, top 15% 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

1 citing paper in PubMed, 6 citations in OpenAlex.

  1. The imperative to prevent joint bleeding in everyone living with hemophilia.Research and practice in thrombosis and haemostasis · 2024
    Article
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

6 authors at 3 institutions in 1 country.

Richard A WilkinsLeeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK. r.a.wilkins@leeds.ac.uk.ORCID http://orcid.org/0000-0003-1885-5472
Heidi J SiddleLeeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
Graham J ChapmanSchool of Sport and Health Sciences, University of Central Lancashire, Preston, UK.
Elizabeth HornLeeds Haemophilia Comprehensive Care Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK.
Rebecca WalwynClinical Trials Research Unit, Leeds Institute of Clinical Trials Research, University of Leeds, Leeds, UK.
Anthony C RedmondLeeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
University of Leeds · GBLeeds Teaching Hospitals NHS Trust · GBUniversity of Lancashire · GB

Funding

Research Trainees Coordinating Centre ICA-CDRF-2015-01-0120
6 · The paper itself

Abstract

backgroundHaemophilia is an X-linked recessive genetic disorder characterised by bleeding within soft tissue and joints. The ankle is disproportionally affected by haemarthropathy when compared to the elbows and knees; reported as the most affected joints in patients with haemophilia. Despite advances in treatment, patients still report ongoing pain and disability, however, the impact has not been evaluated, nor has the effect on health-related quality of life (HRQoL) or foot and ankle patient-reported outcome measures (PROMs). The primary aim of this study was to establish the impact of ankle haemarthropathy in patients with severe and moderate haemophilia A and B. Secondly to identify the clinical outcomes associated with a decline in HRQoL and foot and ankle PROMs.

methodsA cross-sectional multi-centre questionnaire study was conducted across 18 haemophilia centres in England, Scotland and Wales with a recruitment target of 245 participants. The HAEMO-QoL-A and Manchester-Oxford Foot Questionnaire (MOXFQ) (foot and ankle) with total and domain scores measured impact on HRQOL and foot and ankle outcomes. Demographics, clinical characteristics, ankle haemophilia joint health scores, multi-joint haemarthropathy and Numerical Pain Rating Scales (NPRS) of "ankle pain over the past six months" were collected as a measure of chronic ankle pain.

resultsA total of 243 of 250 participants provided complete data. HAEMO-QoL-A and MOXFQ (foot and ankle) total and index scores indicated worse HRQoL with total scores ranging from a mean of 35.3 to 35.8 (100 best-health) and 50.5 to 45.8 (0 best-health) respectively. NPRS (mean (SD)) ranged from 5.0 (2.6) to 5.5 (2.5), with median (IQR) ankle haemophilia joint health score of 4.5 (1 to 12.5) to 6.0 (3.0 to 10.0) indicating moderate to severe levels of ankle haemarthropathy. Ankle NPRS over six months and inhibitor status were associated with decline in outcome.

conclusionsHRQoL and foot and ankle PROMs were poor in participants with moderate to severe levels of ankle haemarthropathy. Pain was a major driver for decline in HRQoL and foot and ankle PROMs and use of NPRS has the potential to predict worsening HRQoL and PROMs at the ankle and other affected joints.

Indexed as

Hemophilia AAnkleArthralgiaCross-Sectional StudiesHumansPainPatient Reported Outcome MeasuresQuality of LifeSurveys and QuestionnairesAnkleHaemarthropathyHaemarthrosisHealth-related quality of lifeImpact

Identifiers

PMID36899385
PMCPMC10007846
OpenAlexW4323838336

What OpenQuestion holds

Textfull text, public
LicenceCC BY
reference markers read1
measurements read49
Read underepoch 390

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.