Evidence map›Paper›PMID 35158976›Full record

ArticleCancers2022

Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis.

Anne-Rose W Schut, Emma Lidington, Milea J M Timbergen, Eugenie Younger, Winette T A van der Graaf, Winan J van Houdt, Johannes J Bonenkamp, Robin L Jones, Dirk J Grünhagen, Stefan Sleijfer and 3 more

Abstract read
In one paragraph

Article in Cancers, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Nirogacestat, a γ-Secretase Inhibitor for Desmoid Tumors.The New England journal of medicine · 2023
    Trial
  2. Article
  3. Review
  4. Review
  5. Article
  6. Desmoid Tumors: A Comprehensive Review.Advances in therapy · 2023
    Review
  7. Article
  8. 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.

Anne-Rose W SchutDepartment of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0002-5131-6959
Emma LidingtonSarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.ORCID 0000-0001-6176-8054
Milea J M TimbergenDepartment of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.
Eugenie YoungerSarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.
Winette T A van der GraafDepartment of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0001-7549-3338
Winan J van HoudtDepartment of Surgical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands.ORCID 0000-0002-2303-3468
Johannes J BonenkampDepartment of Surgical Oncology, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands.
Robin L JonesSarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.ORCID 0000-0003-4173-3844
Dirk J GrünhagenDepartment of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0001-8293-6002
Stefan SleijferDepartment of Medical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.
Cornelis VerhoefDepartment of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0001-9980-8613
Spyridon GennatasSarcoma Unit, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK.ORCID 0000-0002-5635-7696
Olga HussonDepartment of Surgical Oncology, Erasmus MC Cancer Institute, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0002-1387-8686

Funding

Nederlandse Organisatie voor Wetenschappelijk Onderzoek VIDI198.007NIHR Biomedical Research Centre, Royal Marsden NHS Foundation Trust/Institute of Cancer Research B038Social Psychology Fellowship from the Dutch Cancer Society KUN2015-7527Stichting Coolsingel 566
6 · The paper itself

Abstract

Sporadic desmoid-type fibromatosis (DTF) is a rare, non-metastasising soft-tissue tumour. Patients can experience a variety of disease-specific issues related to the unpredictable clinical course and aggressiveness of DTF, which negatively impacts health-related quality of life (HRQoL). These DTF-specific issues are not captured by generic HRQoL tools. A 102-item provisional DTF-specific HRQoL tool, the DTF-QoL, was previously developed. The aim of this study was to pre-test the psychometric properties of the DTF-QoL by administering it together with the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) to 236 DTF patients from the United Kingdom and the Netherlands. Construct validity and reliability were determined based on factor analysis, multi-trait scaling analysis, Cronbach's alpha, and correlations with the EORTC QLQ-C30 scales. Ninety-six items were selected, conceptualised into three symptom scales, eleven disease-impact scales and six single items, together forming the final DTF-QoL. Scaling assumptions were fully or moderately met for ten out of fourteen scales. Cronbach's alpha ranged from 0.551-0.908. Most scales of the DTF-QoL were weakly or moderately correlated with the EORTC QLQ-C30. The DTF-QoL is a promising tool capturing the whole spectrum of DTF-specific issues. Implementation of the DTF-QoL in research and clinical practice will help to personalise HRQoL measurement and clinical care for DTF patients.

Indexed as

desmoid-type fibromatosisdisease-specific measureshealth-related quality of lifepatient-reported outcomesrare diseases

Identifiers

PMID35158976
PMCPMC8833407

What OpenQuestion holds

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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.