Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis
<i>Background and Objectives</i>: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between indivi...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-09-01
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| Series: | Medicina |
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| Online Access: | https://www.mdpi.com/1648-9144/59/9/1655 |
| _version_ | 1797578908103606272 |
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| author | Nora Giese Emilee Gilbert Alexandra Hawkey Mike Armour |
| author_facet | Nora Giese Emilee Gilbert Alexandra Hawkey Mike Armour |
| author_sort | Nora Giese |
| collection | DOAJ |
| description | <i>Background and Objectives</i>: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. <i>Materials and Methods</i>: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. <i>Results</i>: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. <i>Conclusions</i>: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation. |
| first_indexed | 2024-03-10T22:29:22Z |
| format | Article |
| id | doaj.art-c997431307cf4b2494460051df66bc7a |
| institution | Directory Open Access Journal |
| issn | 1010-660X 1648-9144 |
| language | English |
| last_indexed | 2024-03-10T22:29:22Z |
| publishDate | 2023-09-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Medicina |
| spelling | doaj.art-c997431307cf4b2494460051df66bc7a2023-11-19T11:53:01ZengMDPI AGMedicina1010-660X1648-91442023-09-01599165510.3390/medicina59091655Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with EndometriosisNora Giese0Emilee Gilbert1Alexandra Hawkey2Mike Armour3Praxis für Chinesische Medizin, 53113 Bonn, GermanySchool of Psychology, Western Sydney University, Penrith, NSW 2751, AustraliaTranslational Health Research Institute (THRI), Western Sydney University, Penrith, NSW 2751, AustraliaTranslational Health Research Institute (THRI), Western Sydney University, Penrith, NSW 2751, Australia<i>Background and Objectives</i>: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. <i>Materials and Methods</i>: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. <i>Results</i>: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. <i>Conclusions</i>: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.https://www.mdpi.com/1648-9144/59/9/1655endometriosisresearch prioritiesfocus groupsunmet needsAustralia |
| spellingShingle | Nora Giese Emilee Gilbert Alexandra Hawkey Mike Armour Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis Medicina endometriosis research priorities focus groups unmet needs Australia |
| title | Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis |
| title_full | Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis |
| title_fullStr | Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis |
| title_full_unstemmed | Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis |
| title_short | Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis |
| title_sort | unmet needs of australians in endometriosis research a qualitative study of research priorities drivers and barriers to participation in people with endometriosis |
| topic | endometriosis research priorities focus groups unmet needs Australia |
| url | https://www.mdpi.com/1648-9144/59/9/1655 |
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