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Lorraine Mary Creech
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EP1.06 - Mesothelioma (ID 196)
- Event: WCLC 2019
- Type: E-Poster Viewing in the Exhibit Hall
- Track: Mesothelioma
- Presentations: 1
- Now Available
- Moderators:
- Coordinates: 9/08/2019, 08:00 - 18:00, Exhibit Hall
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EP1.06-03 - The Mesothelioma Outcomes, Research and Experience (MORE) Survey. Using Real World Research Methodology (Now Available) (ID 1864)
08:00 - 18:00 | Presenting Author(s): Lorraine Mary Creech
- Abstract
Background
Malignant mesothelioma is a locally invasive neoplasm arising from the mesothelial surfaces of the pleural cavity & a smaller number of cases affecting the peritoneum. Annually approximately 2,700 are diagnosed with mesothelioma in the UK with approximately 2,500 deaths.(CRUK 2019)
In 2012 Mesothelioma UK (MUK) undertook a patient experience survey enabling MUK to inform healthcare providers what was done well, what could be improved & to demonstrate where there were variations in care.
As a primary objective MUK are replicating the 2012 survey to update recommendations representing the patient experience & to circulate these to the mesotheloma community and healthcare providers.
A secondary objective will deliver data to support regulatory discussions for new medical interventions. This will include the collection of treatment histories, patient reported outcome measures, NHS resource use & non-medical patient costs. This will provide a comprehensive evidence portfolio, from which the understanding & burden of disease in mesothelioma can be identified/quantified, so that the provision of services for individuals can be deployed. The survey will provide cost effective utility assessments assisting in the approval for new therapeutic interventions.
Method
The survey is anonymous, prospective, cross sectional & non-interventional. Recruitment of mesothelioma patients is via a number of methods coordinated & led by MUK.The research will collect circa 600 participants over 26 weeks from January to June 2019..
Participants are given a survey that includes questions on standard demographics, experience of care (questions adapted from the 2012 Mesothelioma Experience Survey), HRQol and previous/current clinical management. On completion of the survey, the participants are asked to provide consent for the CNS to review /validate the clinical section & the information provided on their clinical management.
Result
A full statistical analysis plan will be developed and disseminated following completion of the survey and review of the data.
Conclusion
MUK believes the data being collected using this unique methodology will be the only data of its kind to examine real world patient demographics, occupational histories, treatment pathways, individual experience and the burden of disease.
