QUEST: QUality of Life and Experiences of Sarcoma Trajectories
NCT ID: NCT03441906
Last Updated: 2020-03-13
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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UNKNOWN
350 participants
OBSERVATIONAL
2018-02-15
2021-02-28
Brief Summary
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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.
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Detailed Description
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Patients will be invited before the start of treatment (with a two months eligibility window) and receive a questionnaire on diagnostic delay, risk factors and patient-reported outcomes. The questionnaire on patient-reported outcomes will be completed again 3 months, 6 months, 1-year and 2 years later.
Data collection will be done within PROFILES, an international registry for cancer patient reported outcomes (www.profilesregistry.nl). Clinical data will be collected through cancer registries and the junior investigator will collect extra data from patients' records.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Eligibility Criteria
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Inclusion Criteria
* 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
* 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.
18 Years
ALL
No
Sponsors
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Radboud University Medical Center
OTHER
Responsible Party
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Principal Investigators
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Winette van der Graaf, Prof, MD
Role: PRINCIPAL_INVESTIGATOR
Radboud University Medical Center
Locations
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NKI-AVL
Amsterdam, , Netherlands
UMCG
Groningen, , Netherlands
LUMC
Leiden, , Netherlands
Radboudumc
Nijmegen, , Netherlands
Erasmus medical centre
Rotterdam, , Netherlands
Royal Orthopaedic Hospital
Birmingham, , United Kingdom
Royal Marsden NHS Foundation Trust
London, , United Kingdom
The Christie NHS Foundation Trust
Manchester, , United Kingdom
Countries
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Central Contacts
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Facility Contacts
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Vicky Soomers
Role: primary
Vicky Soomers
Role: primary
Vicky Soomers
Role: primary
Vicky Soomers
Role: primary
Vicky Soomers
Role: primary
References
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Soomers 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.
Other Identifiers
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2017-3881
Identifier Type: -
Identifier Source: org_study_id
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