Evidence map›Paper›PMID 35845207›Full record

ArticleEJHaem2021

Routine management, healthcare resource use and patient and carer-reported outcomes of patients with transfusion-dependent β-thalassaemia in the United Kingdom: A mixed methods observational study.

Farrukh Shah, Paul Telfer, Mark Velangi, Shivan Pancham, Robert Wynn, Sally Pollard, Elizabeth Chalmers, Jonathan Kell, Angela M Carter, Joe Hickey and 3 more

Open access · diamondAbstract read
In one paragraph

Article in EJHaem, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed
3.2field-weighted citation impact, top 7% 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

17 citing papers in PubMed, 32 citations in OpenAlex.

  1. Trial
  2. Humanistic and economic burden among caregivers of adults and children with transfusion dependent β-thalassemia: a mixed-methods study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  3. Review
  4. Observational
  5. Health-related quality of life and economic impacts in adults with transfusion-dependent β-thalassemia: findings from a prospective longitudinal real-world study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
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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

13 authors at 11 institutions in 3 countries.

Farrukh ShahWhittington Hospital London UK.
Paul TelferCentre for Genomics and Child Health Blizard Institute Queen Mary University of London London UK.
Mark VelangiBirmingham Children's Hospital Birmingham UK.
Shivan PanchamBirmingham City Hospital Birmingham UK.
Robert WynnRoyal Manchester Children's Hospital Manchester UK.
Sally PollardBradford Royal Infirmary Bradford UK.
Elizabeth ChalmersRoyal Hospital for Children Glasgow UK.
Jonathan KellUniversity Hospital of Wales Cardiff UK.
Angela M CarterOPEN Health Marlow UK.ORCID https://orcid.org/0000-0001-6466-5595
Joe HickeyOPEN Health Marlow UK.
Clark Paramorebluebird bio Cambridge Massachusetts USA.
Minesh Jobanputrabluebird bio UK Basingstoke UK.
Kate RyanManchester Royal Infirmary Manchester UK.
Birmingham Children's Hospital · GBBirmingham City Hospital · GBBluebird Bio (France) · FRBluebird Bio (United States) · USBoston Children's Hospital · USBradford Royal Infirmary · GBManchester Royal Infirmary · GBQueen Mary University of London · GBRoyal Hospital for Children · GBUniversity Hospital of Wales · GBWhittington Hospital · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objectives: We evaluated routine healthcare management, clinical status and patient- and carer-reported outcomes in UK paediatric and adult patients with transfusion-dependent β-thalassaemia (TDT). Methods: A multi-centre, observational mixed-methodology study evaluated 165 patients (50% male; median age 24.1 [interquartile range (IQR)] 11.8-37.2] years) from nine UK centres. Results: Patients had a mean of 13.7 (standard deviation [SD] ±3.2) transfusion episodes/year (mean retrospective observation period 4.7 [±0.7] years). The median (IQR) for iron overload parameters at the last assessment during the observation period were: serum ferritin ( Conclusions: TDT presents significant burden on patients, carers and healthcare resources.

Indexed as

blood transfusionhealthcare resource useiron chelation therapyquality of lifetransfusion‐dependent β‐thalassaemia

Identifiers

PMID35845207
PMCPMC9175788
OpenAlexW4205891620

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.