search

menu

  • Research Research
    • Where science meets inspired minds

    • Back
    • Research
    • Our Science
    • Research Groups
    • Facilities & Platforms
    • Clinical research
    • Find a researcher
    • Publications
    • Knowledge Transfer
  • Careers & study Careers & study
    • Become a leader in cancer research

    • Back
    • Careers & study
    • Vacancies
    • Faculty
    • Scientific staff
    • Scientific support staff
    • Postdoctoral fellows
    • PhD Students
    • Operational staff
    • Clinical fellows
    • Life in Amsterdam
    • Student internships
  • News & Events News & Events
    • Check out our stories and events

    • Back
    • News & Events
    • News
    • Media & Press
    • Calendar
  • About us About us
    • Maximum impact for cancer patients

    • Back
    • About us
    • Our vision
    • Organization
    • Collaborations
    • Responsible Research
    • Support us
    • Visit us
    • Contact us
  • Support us
Support us
  • Home
  • Publications
  • Research
  • Publications
  • 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.

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 ,
Alexander T J Lee ,
Cornelis Verhoef ,
Winan J van Houdt ,
Robin J Young ,
Susie Bae ,
Vladimir Andelkovic ,
Angela M Hong ,
Joanna Connor ,
Carlos Koops ,
Winette T A van der Graaf ,
Olga Husson

Abstract

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.

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.

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.

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.

TRIAL REGISTRATION NUMBER

NCT03441906; Results.

DESIGN

International observational cohort study.

More about this publication

BMJ open

Volume 16
Issue nr. 5
Pages e114422
Publication date 04-05-2026

Full text links

Publisher website (DOI) 10.1136/bmjopen-2025-114422
Europe PubMed Central 42082226
Pubmed 42082226

Where science meets inspired minds

Contact

Plesmanlaan 121
1066CX Amsterdam

020 512 9111 communicatie@nki.nl

Quick links

  • Vacancies
  • News
  • Contact us
  • Media & Press

Follow us on

Disclaimer
Privacy statement
Cookies
Change cookie settings

This site uses cookies

This website uses cookies to ensure you get the best experience on our website.