2023 World Conference on Lung Cancer (Posters)-P2.18. Co-designing an Experience of Care and Quality of Life Survey for an Australian Mesothelioma Clinical Outcomes Registry

P2.18. Co-designing an Experience of Care and Quality of Life Survey for an Australian Mesothelioma Clinical Outcomes Registry - PDF(Slides)

Back to course

Pdf Summary

The Victorian Mesothelioma Outcomes Registry (VMOR) is a new study aimed at understanding patterns of care and access to immunotherapy for people diagnosed with mesothelioma in Victoria, Australia. As part of the study, a qualitative cognitive interview was conducted to gather the views of people living with mesothelioma about a quality of life and quality of care survey to be used in the future. <br /><br />Twenty people living with mesothelioma were invited to participate in the interview, which involved discussing the draft survey and providing feedback on its content, length, frequency of completion, and preferred methods of completion. The interviews were thematically analyzed, and the results showed that the survey was generally acceptable in length, with most participants preferring a postal survey over email/online. Almost all participants recommended adding a section for free text to include anything they felt was not covered in the survey. The majority also suggested that the survey be sent twice, around 3-6 months apart, and that links to available support services be included at the end of the survey. <br /><br />The interviews highlighted the importance of support and information provision for people diagnosed with mesothelioma, and detailed analysis of this theme is ongoing. Overall, there was clear support for the introduction of the VMOR survey to explore patient-reported experience and quality of life for people living with mesothelioma. Minor modifications will be made to the survey before it is sent to people diagnosed with mesothelioma and recruited into the registry in 2023-2024.

Asset Subtitle

Dani Samankula

Meta Tag

Speaker Dani Samankula

Topic Mesothelioma, Thymoma & Other Thoracic Tumors: Clinical

Keywords

Victorian Mesothelioma Outcomes Registry

patterns of care

access to immunotherapy

mesothelioma

Victoria, Australia

qualitative cognitive interview

quality of life

quality of care survey

postal survey

support services