Evidence map›Paper›PMID 41300976›Full record

ArticleCancers2025

Patient Perception of the Relevance of Quality-of-Life Questionnaires in Waldenström Macroglobulinaemia: An International Survey.

Jahanzaib Khwaja, Sotirios Bristogiannis, Ibrahim Tohidi-Esfahani, Yadanar Lwin, Nicole Japzon, David Young, Sossana Delibasi, Shirley D'Sa, Judith Trotman, Charalampia Kyriakou

Abstract read
In one paragraph

Article in Cancers, 2025. 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
–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

1 citing paper in PubMed.

  1. 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

10 authors.

Jahanzaib KhwajaDepartment of Haematology, University College London Hospital, London NW1 2BU, UK.ORCID 0000-0002-4993-7828
Sotirios BristogiannisDepartment of Haematology, Evangelismos Hospital, 10676 Athens, Greece.ORCID 0000-0002-9732-9851
Ibrahim Tohidi-EsfahaniDepartment of Haematology, Concord Repatriation General Hospital, University of Sydney, Concord 2139, Australia.
Yadanar LwinDepartment of Haematology, Nottingham University Hospital NHS Trust, Nottingham NG7 2GT, UK.
Nicole JapzonDepartment of Haematology, Evangelismos Hospital, 10676 Athens, Greece.
David YoungWMozzies, Australian Affiliate International Waldenstroms Macroglobulinaemia Foundation, Sydney, Australia.
Sossana DelibasiDepartment of Haematology, Evangelismos Hospital, 10676 Athens, Greece.ORCID 0000-0001-7523-7510
Shirley D'SaDepartment of Haematology, University College London Hospital, London NW1 2BU, UK.
Judith TrotmanDepartment of Haematology, Concord Repatriation General Hospital, University of Sydney, Concord 2139, Australia.
Charalampia KyriakouDepartment of Haematology, University College London Hospital, London NW1 2BU, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Waldenström Macroglobulinaemia is an indolent disease which is recognised as contributing to a diverse range of disabling symptoms which can impact quality of life. Little data are available in evaluating patient and healthcare professional views on quality-of-life questionnaires (QLQ) used to evaluate quality of life in Waldenström Macroglobulinaemia. We aimed to assess patient perception of their disease and the relevance of the currently employed QLQs in practice by patients and healthcare professionals. One-hundred-and-twenty patients (22% treatment-naïve) and thirty-four healthcare professionals completed an international survey to understand their perception of the relevance of the currently employed QLQ. Out of 415 questions, 257 questions were classified by patients as relevant. Five themes were discerned as relevant: fatigue, mobility, dyspnoea, paraesthesia, pain in the hands and feet, sleep (physical health limitations); contentment (psychological impact); social and family support. The following were considered irrelevant: lumps or swelling, dry mouth, trouble hearing, sexual dysfunction (physical symptoms); post-traumatic stress (psychological impact); education and training and financial support. Healthcare professionals identified EORTC QLQ-C30 as the most commonly used instruments for Waldenström Macroglobulinaemia trials.

Indexed as

lymphoplasmacytic lymphomaquality of lifeWaldenstrom macroglobulinaemia

Identifiers

PMID41300976
PMCPMC12651497

What OpenQuestion holds

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LicenceCC BY
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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.