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Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis

Background and Objectives: 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 endometr...

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Autores principales: Giese, Nora, Gilbert, Emilee, Hawkey, Alexandra, Armour, Mike
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10536628/
https://www.ncbi.nlm.nih.gov/pubmed/37763774
http://dx.doi.org/10.3390/medicina59091655
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author Giese, Nora
Gilbert, Emilee
Hawkey, Alexandra
Armour, Mike
author_facet Giese, Nora
Gilbert, Emilee
Hawkey, Alexandra
Armour, Mike
author_sort Giese, Nora
collection PubMed
description Background and Objectives: 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. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: 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. Conclusions: 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.
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spelling pubmed-105366282023-09-29 Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis Giese, Nora Gilbert, Emilee Hawkey, Alexandra Armour, Mike Medicina (Kaunas) Article Background and Objectives: 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. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: 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. Conclusions: 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. MDPI 2023-09-13 /pmc/articles/PMC10536628/ /pubmed/37763774 http://dx.doi.org/10.3390/medicina59091655 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Giese, Nora
Gilbert, Emilee
Hawkey, Alexandra
Armour, Mike
Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis
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 Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10536628/
https://www.ncbi.nlm.nih.gov/pubmed/37763774
http://dx.doi.org/10.3390/medicina59091655
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