QUEST: QUality of Life and Experiences of Sarcoma Trajectories
NCT03441906 · Status: UNKNOWN · Type: OBSERVATIONAL · Enrollment: 350
Last updated 2020-03-13
Summary
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.
Conditions
- Quality of Life
- Sarcoma
- Diagnostic Interval
- Diagnostic Pathway
- Care Needs
Sponsors & Collaborators
-
Radboud University Medical Center
lead OTHER
Principal Investigators
-
Winette van der Graaf, Prof, MD · Radboud University Medical Center
Eligibility
- Min Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2018-02-15
- Primary Completion
- 2020-09-30
- Completion
- 2021-02-28
Countries
- Netherlands
- United Kingdom
Study Locations
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