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

Holthuis, EI; Soomers, VLMN; Rafiq, M; Jones, RL; Hayes, A; Van De Wal, D; Drabbe, C; Been, LB; Bonenkamp, H; van der Hage, JH; Lee, ATJ; Verhoef, C; van Houdt, WJ; Young, RJ; Bae, S; Andelkovic, V; Hong, AM; Connor, J; Koops, C; van der Graaf, WTA; Husson, O

Author(s): Holthuis, EI; Soomers, VLMN; Rafiq, M; Jones, RL; Hayes, A; Van De Wal, D; Drabbe, C; Been, LB; Bonenkamp, H; van der Hage, JH; Lee, ATJ; Verhoef, C; van Houdt, WJ; Young, RJ; Bae, S; Andelkovic, V; Hong, AM; Connor, J; Koops, C; van der Graaf, WTA; Husson, O;
Details: Publication Year 2026-05-04,Volume 16,Issue #5,Page e114422
Journal Title: BMJ Open
Publication Type: Research article
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.
Publisher: BMJ
Keywords: Humans; *Sarcoma/diagnosis; New Zealand; Female; Male; Australia; Middle Aged; United Kingdom; *Early Detection of Cancer; Netherlands; Adult; *General Practitioners; Aged; Cohort Studies; Primary Health Care; Young Adult; Quality of Life; Longitudinal Studies; Adolescent; General Practice; Oncology; Sarcoma
Department(s): Medical Oncology
Publisher's Version: https://doi.org/10.1136/bmjopen-2025-114422
Open Access at Publisher's Site: https://doi.org/10.1136/bmjopen-2025-114422
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2026-05-14 04:57:54

Last Modified: 2026-05-14 04:57:59