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

OBJECTIVE: To investigate how patients with sarcoma present prior to diagnosis-through a general practitioner (GP) or another healthcare professional (HCP)-and describe presenting symptoms. DESIGN: International observational cohort study. SETTING: Data 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. RESULTS: Among 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. CONCLUSIONS: Most 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.

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Publication Details

Journal
BMJ Open
Published
2026-05-01
DOI
https://doi.org/10.1136/bmjopen-2025-114422
Primary Topic
Sarcoma Diagnosis and Treatment
Type
article
Field-Weighted Citation Impact
0.00

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article

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

Vladimir Andelkovic, Deborah van de Wal, Cas Drabbe, Meena Rafiq et al.
BMJ Open
Sarcoma Diagnosis and Treatment
article

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

Vladimir Andelkovic, Deborah van de Wal, Cas Drabbe, Meena Rafiq, Emily I. Holthuis, Susie Bae, Han Bonenkamp, Robin Young, Alexander T J Lee, Angela M Hong, Winan J van Houdt, Andrew Hayes, Robin L Jones, Winette T A van der Graaf, Cornelis Verhoef, Olga Husson, Lukas B Been, Jos H van der Hage, Vicky L M N Soomers, Carlos Koops, Joanna Connor
article en

Abstract

OBJECTIVE: To investigate how patients with sarcoma present prior to diagnosis-through a general practitioner (GP) or another healthcare professional (HCP)-and describe presenting symptoms. DESIGN: International observational cohort study. SETTING: Data 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. RESULTS: Among 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. CONCLUSIONS: Most 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.

BMJ OpenVol. 16(5)
The University of Sydney (AU), Royal Marsden NHS Foundation Trust (GB), University Medical Center Groningen (NL), Radboud University Nijmegen (NL), Dutch Cancer Society (NL), Leiden University Medical Center (NL), Peter MacCallum Cancer Centre (AU), Auckland City Hospital (NZ), Princess Alexandra Hospital (AU), Weston Park Cancer Centre (GB), Radboud University Medical Center (NL), Chris O’Brien Lifehouse (AU), Sheffield Teaching Hospitals NHS Foundation Trust (GB), Radboud Institute for Molecular Life Sciences (NL), Royal Marsden Hospital (GB), Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital (NL), Australian Association for Academic Primary Care (AU), Erasmus MC Cancer Institute (NL), University College London (GB)
Eli Lilly and Company
Partnerships for the goals
Openalex Percentile: Top 8%
Sarcoma Diagnosis and Treatment
DOIOpen Access PDFOpenAlex
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