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(Abstract)

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This abstract discusses the design of a survey for an Australian Mesothelioma Clinical Outcomes Registry. The registry is a new observational cohort study for people diagnosed with mesothelioma in Victoria, Australia. The study aims to understand patterns of care and access to immunotherapy for this rare malignancy, as well as learn from patient-reported experiences of their diagnosis and care. The abstract reports the outcomes of a qualitative cognitive interview study conducted to obtain the views of people living with mesothelioma who were recruited into the registry.<br /><br />The study involved 20 participants who were interviewed via phone. They were asked about their views on the draft survey, including whether it captured meaningful outcomes and experiences, its appropriateness in terms of length and frequency of completion, and their preferred methods of completion. The interview transcripts will be thematically analyzed. The draft survey was designed by a working group consisting of clinicians, psychologists, patients, carers, and advocates, with input from relevant organizations.<br /><br />The results show that the participants generally found the survey to be important and acceptable in terms of length. Most of them preferred receiving a postal survey rather than completing it online. Almost all participants recommended adding a section for free text where they could add any additional information they felt was not covered. The majority of participants believed the survey should be sent twice, around 3-6 months apart. Furthermore, most participants felt it was important to include links to available support services within the state at the end of the survey.<br /><br />In conclusion, there was clear support for the introduction of the survey exploring patient-reported experience and quality of life for people living with mesothelioma. The survey is deemed acceptable in length and content, with some minor modifications, to be sent to people diagnosed with mesothelioma and recruited into the registry in the coming years.

Asset Subtitle

Dani Samankula

Meta Tag

Speaker Dani Samankula

Topic Mesothelioma, Thymoma & Other Thoracic Tumors: Clinical

Keywords

Australian Mesothelioma Clinical Outcomes Registry

observational cohort study

mesothelioma

patterns of care

access to immunotherapy

patient-reported experiences

qualitative cognitive interview study

draft survey

preferred methods of completion

thematic analysis