The impact of the diagnostic pathway in sarcoma patients
Research type
Research Study
Full title
QUEST: QUality of life and Experiences of Sarcoma Trajectories
IRAS ID
233742
Contact name
Victorien Soomers
Contact email
Sponsor organisation
Institute of Cancer Research
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Summary of Research:
What research question is being addressed?
Sarcomas are rare cancers of bone and soft tissue. The prognosis of these patients suffers from delay in diagnosis. 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 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 (tumour stage), time to local/distant relapse and overall survival. This should lead to advices about faster referral where
possible.How will data be collected?
Patients will answer online questionnaires before treatment has been started, and during follow-up at 3, 6, 12 and 24 months. They will be asked about their diagnostic pathway, quality of life, care experiences, coping mechanisms, care needs and psychological distress.
We will include patients during a 1.5 years period. The baseline questionnaire, which is the most elaborate, will take 1-1.5 hours to complete.Who would be eligible?
All patients, aged 18 years or above, with a new diagnosis of sarcoma and who are capable of providing informed consent and completing our questionaires, will be considered for entry into this study. Patients with GIST tumours will be excluded.Where is the study being run?
The study will be conducted at the Royal Marsden Hospital.
It will also run at five centres in The Netherlands, for which separate ethical approvement has been given in The Netherlands, according to Dutch guidelines.Summary of Findings:
This study investigates the delays faced by Dutch and UK sarcoma patients in receiving a diagnosis, which can potentially affect quality of life and treatment outcomes. The research, involving 521 adults recently diagnosed with sarcoma, found that 56% of patients waited one month or longer before seeing a healthcare professional for their symptoms, and 12% waited three months or more. After their first visit, 41% of patients had to wait a month or longer to receive a diagnosis, and 14% had to wait three months or more. The findings show that women, patients with bone sarcomas, and those with sarcomas located outside the limbs are particularly vulnerable to delays. Future research will explore the reasons for these delays and their impact on treatment and quality of life, with the goal of developing strategies to speed up the diagnostic process for sarcoma patients.REC name
Wales REC 6
REC reference
18/WA/0096
Date of REC Opinion
11 Apr 2018
REC opinion
Further Information Favourable Opinion