Evidence map›Paper›PMID 34667923›Full record

ArticleResearch and practice in thrombosis and haemostasis2021

Recombinant factor IX-Fc fusion protein in severe hemophilia B: Patient-reported outcomes and health-related quality of life.

Mairead O'Donovan, Eimear Quinn, Kate Johnston, Evelyn Singleton, Julie Benson, Brian O'Mahony, Declan Noone, Cleona Duggan, Ruth Gilmore, Kevin Ryan and 3 more

Abstract read
In one paragraph

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 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. HAEMFIX: Impact of Switching From SHL-FIX to EHL-FIX in Patients With Haemophilia B.Haemophilia : the official journal of the World Federation of Hemophilia
    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

13 authors.

Mairead O'DonovanNational Coagulation Centre St James's Hospital Dublin Ireland.ORCID https://orcid.org/0000-0001-5103-3855
Eimear QuinnNational Coagulation Centre St James's Hospital Dublin Ireland.
Kate JohnstonNational Coagulation Centre St James's Hospital Dublin Ireland.
Evelyn SingletonNational Coagulation Centre St James's Hospital Dublin Ireland.
Julie BensonNational Coagulation Centre St James's Hospital Dublin Ireland.
Brian O'MahonySchool of Medicine Trinity College Dublin Dublin Ireland.ORCID https://orcid.org/0000-0001-9780-6972
Declan NooneIrish Haemophilia Society Dublin Ireland.ORCID https://orcid.org/0000-0003-2183-4277
Cleona DugganCork University Hospital Cork Ireland.
Ruth GilmoreUniversity Hospital Galway Galway Ireland.
Kevin RyanNational Coagulation Centre St James's Hospital Dublin Ireland.
James S O'DonnellNational Coagulation Centre St James's Hospital Dublin Ireland.ORCID https://orcid.org/0000-0003-0309-3313
Niamh M O'ConnellNational Coagulation Centre St James's Hospital Dublin Ireland.ORCID https://orcid.org/0000-0002-7005-5328
Johnny MahlanguNational Coagulation Centre St James's Hospital Dublin Ireland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionIn 2017, all people with severe hemophilia B in Ireland switched to recombinant factor IX Fc fusion protein concentrate (rFIXFc) prophylaxis. Patient-reported outcomes (PROs) and health-related quality of life (HRQoL) are important to evaluate with new treatments.

aimsTo assess HRQoL in people with severe hemophilia B and their experience after switching to rFIXFc prophylaxis.

methodsParticipants completed a Patient Reported Outcomes Burden and Experience (PROBE) questionnaire on initiation and following two years of rFIXFc prophylaxis. The PROBE questionnaire has four domains: demographics, general health, haemophilia-specific, and European Quality of Life 5-Dimensions (EQ-5D-5L) questionnaire.

resultsTwenty-three participants completed the questionnaire at both time points. The number of activities where chronic pain occurred and interfered with the activity was reduced by 25% and 33%, respectively (

conclusionThis study of real-world patient experience using PROs demonstrates a reduction in chronic pain and improvement in ADLs in participants after switching to rFIXFc prophylaxis. It provides important insights into patient-identified health care needs and living with severe hemophilia B.

Indexed as

extended half‐life concentratehealth‐related quality of lifehemophilia Bpainpatient‐reported outcomes

Identifiers

PMID34667923
PMCPMC8505226

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

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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.