Evidence map›Paper›PMID 42082226›Full record

Observational studyBMJ open2026

Pre-diagnostic route reported by patients with sarcoma from the Netherlands, the UK, Australia and New Zealand: early detection challenges for general practitioners - an international observational cohort study.

Emily I Holthuis, Vicky L M N Soomers, Meena Rafiq, Robin L Jones, Andrew Hayes, Deborah Van De Wal, Cas Drabbe, Lukas B Been, Han Bonenkamp, Jos H van der Hage and 11 more

Registry-linked trialAbstract readObservational StudyMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in BMJ open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03441906 (QUEST), which is not on this map. Not yet cited in PubMed.

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

NCT03441906 unknown statusnot on this map

QUEST: QUality of Life and Experiences of Sarcoma Trajectories

Typeobservational_patient_registrySponsorRadboud University Medical CenterRan2018 to 2021Enrolled350ConditionsQuality of Life, Sarcoma, Diagnostic Interval, Diagnostic Pathway
3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

21 authors.

Emily I HolthuisDepartment of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands e.holthuis@nki.nl.ORCID http://orcid.org/0000-0002-2556-4553
Vicky L M N SoomersDepartment of Medical Oncology, Radboud Institute of Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands.ORCID http://orcid.org/0000-0003-0019-3968
Meena RafiqEpidemiology of Cancer Healthcare & Outcomes (ECHO) Group, Department of Behavioural Science, Institute of Epidemiology and Health Care (IEHC), UCL, London, UK.
Robin L JonesSarcoma Unit, Medical Oncology Department, Institute of Cancer Research, The Royal Marsden Hospital, London, UK.ORCID http://orcid.org/0000-0003-4173-3844
Andrew HayesSarcoma Unit, Department of Surgery, Royal Marsden Hospital NHS Trust, London, UK.
Deborah Van De WalDepartment of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands.
Cas DrabbeDepartment of Primary and Community Care, Radboud Institute of Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands.
Lukas B BeenSurgery Oncology Department, University Medical Centre Groningen, Groningen, The Netherlands.
Han BonenkampSurgery Oncology Department, Radboud University Medical Center, Nijmegen, The Netherlands.
Jos H van der HageSurgery Oncology Department, Leiden University Medical Center, Leiden, The Netherlands.
Alexander T J LeeSarcoma Unit, The Royal Marsden NHS Foundation Trust, London, UK.
Cornelis VerhoefDepartment of Surgical Oncology and Gastrointestinal Surgery, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands.
Winan J van HoudtSurgical Oncology Department, NKI-AVL - Antoni van Leeuwenhoek Hospital, Netherlands Cancer Institute, Amsterdam, The Netherlands.
Robin J YoungWeston Park Cancer Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
Susie BaeDepartment of Medical Oncology, St Andrews Place, Peter MacCallum Cancer Centre, East Melbourne, Victoria, Australia.
Vladimir AndelkovicDepartment of Medical Oncology, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia.
Angela M HongDepartment of Radiation Oncology, Chris O'Brien Lifehouse, Camperdown, New South Wales, Australia.
Joanna ConnorTe Pūriri o Te Ora, Auckland City Hospital, Auckland, New Zealand.
Carlos KoopsDutch Sarcoma Patient Platform, Amsterdam, The Netherlands.
Winette T A van der GraafDepartment of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands.
Olga HussonMedical Oncology Department, NKI-AVL - Antoni van Leeuwenhoek Hospital, Netherlands Cancer Institute, Amsterdam, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo investigate how patients with sarcoma present prior to diagnosis-through a general practitioner (GP) or another healthcare professional (HCP)-and describe presenting symptoms.

designInternational observational cohort study.

settingData were obtained from the longitudinal 'QUality of life and Experiences of Sarcoma Trajectories' (QUEST) cohort study, conducted across the Netherlands, the United Kingdom (UK), Australia and New Zealand.

resultsAmong 572 patients, 487 (85.1%) started their diagnostic trajectory at the GP (subcohort 1) and 85 (14.9%) with another HCP (subcohort 2)-mainly medical specialists treating unrelated conditions (36/85; 42.4%). Soft tissue sarcoma patients most often reported swelling, whereas bone sarcoma patients reported unexplained pain. Notably, 31/85 (36.5%) of subcohort 2 were asymptomatic. Reasons for delaying GP visits included assuming symptoms were minor and expecting them to resolve. Patients sought care when, among others, symptoms persisted and worsened.

conclusionsMost patients first consulted a GP, underlining the role of primary care in sarcoma diagnosis internationally. Due to rarity and nonspecific symptoms, faster diagnosis remains challenging, requiring improvements in both primary and specialist care. TRIAL REGISTRATION NUMBER: NCT03441906; Results.

Indexed as

Early Detection of CancerGeneral PractitionersSarcomaAdolescentAdultAgedAustraliaCohort StudiesFemaleGeneral PracticeHumansMaleMiddle AgedNetherlandsNew ZealandQuality of LifeGeneral PracticeONCOLOGYPrimary Health CareSarcoma

Identifiers

PMID42082226
PMCPMC13141117

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Registered trials

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.