QUEST: QUality of Life and Experiences of Sarcoma Trajectories

Background: The prognosis of patients with rare cancers in general and sarcomas in particular suffers from delay in diagnosis. Routes to diagnosis for sarcoma need to be quicker and more streamlined, but have neither been studied in detail in larger numbers before, nor in a direct comparison between two countries with different health systems. Comprehensive assessment of diagnostic delays and its determinants, including demographic, clinical, psychosocial and health care system factors, is necessary to improve referral pathways and come to best practice and patient reported outcomes for sarcoma patients. Research questions to be answered: This study aims to quantify diagnostic delay (including patient, general practitioner and system delay) and evaluates routes to diagnosis and referral to sarcoma expert centres in the Netherlands and England; to comprehensively evaluate risk factors of diagnostic delay; determine the association between diagnostic delay and outcomes (health-related quality of life, quality-adjusted life years, patient satisfaction, TNM classification, time to local/distant relapse and overall survival); and to assess differences between both countries. This should lead to advices about faster referral where possible.

Sex

All

Minimum age

18 Years

Inclusion Criteria:

* Age at diagnosis ≥ 18 years
* Diagnosis of sarcoma (histology confirmed by sarcoma histopathologist; according to ICD-10-GM codes C40 and C41 for bone sarcoma and C49 for soft-tissue sarcoma)
* Able to communicate in English (or Dutch)
* Mental capacity to provide informed consent and to participate in the study (as determined by the referring health care professional)
* Patients must be able to complete questionnaires themselves
* Patients must be under treatment or follow-up at one of the participating hospitals.

Exclusion Criteria:

* Too ill to complete questionnaires (according to advice from (former) treating specialist)
* Patients with desmoids fibromatosis will be excluded because of the non-malignancy of the disease; and patients with gastrointestinal stromal tumours (GIST; ICD-10-GM codes C15-20, C26, C48 and C80) will be excluded.

• DERIVEDHolthuis 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. 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. BMJ Open. 2026 May 4;16(5):e114422. doi: 10.1136/bmjopen-2025-114422. PMID 42082226
• DERIVEDSoomers V, Desar IM, van de Poll-Franse LV, Husson O, van der Graaf WT. Quality of life and experiences of sarcoma trajectories (the QUEST study): protocol for an international observational cohort study on diagnostic pathways of sarcoma patients. BMJ Open. 2020 Oct 26;10(10):e039309. doi: 10.1136/bmjopen-2020-039309. PMID 33109665