Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review

Objectives Uterine adenomyosis is a common gynaecological disease that can be debilitating. It is poorly understood and may be overlooked in clinical settings. A research gap exists as there are currently no published scoping reviews on perceptions and experiences early in the illness course. As par...

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Main Authors: Tim J Croudace, Margaret A Taylor, Margot McBride, Fiona E Muir
Format: Article
Language:English
Published: BMJ Publishing Group 2025-01-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/15/1/e087122.full
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author Tim J Croudace
Margaret A Taylor
Margot McBride
Fiona E Muir
author_facet Tim J Croudace
Margaret A Taylor
Margot McBride
Fiona E Muir
author_sort Tim J Croudace
collection DOAJ
description Objectives Uterine adenomyosis is a common gynaecological disease that can be debilitating. It is poorly understood and may be overlooked in clinical settings. A research gap exists as there are currently no published scoping reviews on perceptions and experiences early in the illness course. As part of a professional doctorate thesis, the aim of this review is to systematically retrieve and describe available literature, exploring the impact of living with adenomyosis and perceptions of the diagnostic journey.Design A scoping review is conducted using JBI methodology.Data sources Medline, CINAHL Plus, Web of Science, Google Scholar, Cochrane library, JBI and PROSPERO databases, EThOS online and Google. Searches were made from database inception to July 2023.Eligibility criteria The characteristics of the evidence sourced were deliberately broad. Studies exploring the experiences and perceptions of women diagnosed with adenomyosis were considered.Data extraction and synthesis Titles and abstracts were initially screened. Subsequently, eligibility was clarified through methods section inspection, and the remaining studies were read in depth. A manual hand-search of references of selected studies was conducted. Prespecified data were extracted, charted and categorised into themes.Results Six eligible studies were found, with themes describing impact and burdens, as well as several categories of unsupported needs. No studies specifically focused on perceptions of the diagnostic journey, but some eligible studies made minor reference to this and are included.Conclusions This review highlights the profound impact of adenomyosis and is the first to explore the lived experiences and the diagnostic journey. Understanding the burdens of disease in terms of perceptions and lived experience in combination with the experiences of diagnostic interactions is vital to improving diagnostic pathways. Education with improved multidisciplinary collaboration and further qualitative and case study research will be crucial to achieve this goal.Registration A priori protocol was registered (https://doi.org/10.17605/OSF.IO/2UDYN) and published (https://doi.org/10.1136/bmjopen-2023-075316).
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spelling doaj-art-bad919e95a754653ae0d8fffb2d42d772025-01-21T11:00:14ZengBMJ Publishing GroupBMJ Open2044-60552025-01-0115110.1136/bmjopen-2024-087122Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping reviewTim J Croudace0Margaret A Taylor1Margot McBride2Fiona E Muir3School of Health Sciences, University of Dundee, Dundee, UKUniversity of Dundee, Dundee, UKSchool of Health Sciences, University of Dundee, Dundee, UKSchool of Medicine, University of Dundee, Dundee, UKObjectives Uterine adenomyosis is a common gynaecological disease that can be debilitating. It is poorly understood and may be overlooked in clinical settings. A research gap exists as there are currently no published scoping reviews on perceptions and experiences early in the illness course. As part of a professional doctorate thesis, the aim of this review is to systematically retrieve and describe available literature, exploring the impact of living with adenomyosis and perceptions of the diagnostic journey.Design A scoping review is conducted using JBI methodology.Data sources Medline, CINAHL Plus, Web of Science, Google Scholar, Cochrane library, JBI and PROSPERO databases, EThOS online and Google. Searches were made from database inception to July 2023.Eligibility criteria The characteristics of the evidence sourced were deliberately broad. Studies exploring the experiences and perceptions of women diagnosed with adenomyosis were considered.Data extraction and synthesis Titles and abstracts were initially screened. Subsequently, eligibility was clarified through methods section inspection, and the remaining studies were read in depth. A manual hand-search of references of selected studies was conducted. Prespecified data were extracted, charted and categorised into themes.Results Six eligible studies were found, with themes describing impact and burdens, as well as several categories of unsupported needs. No studies specifically focused on perceptions of the diagnostic journey, but some eligible studies made minor reference to this and are included.Conclusions This review highlights the profound impact of adenomyosis and is the first to explore the lived experiences and the diagnostic journey. Understanding the burdens of disease in terms of perceptions and lived experience in combination with the experiences of diagnostic interactions is vital to improving diagnostic pathways. Education with improved multidisciplinary collaboration and further qualitative and case study research will be crucial to achieve this goal.Registration A priori protocol was registered (https://doi.org/10.17605/OSF.IO/2UDYN) and published (https://doi.org/10.1136/bmjopen-2023-075316).https://bmjopen.bmj.com/content/15/1/e087122.full
spellingShingle Tim J Croudace
Margaret A Taylor
Margot McBride
Fiona E Muir
Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review
BMJ Open
title Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review
title_full Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review
title_fullStr Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review
title_full_unstemmed Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review
title_short Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review
title_sort women s experiences of living with adenomyosis and perceptions of the diagnostic journey a scoping review
url https://bmjopen.bmj.com/content/15/1/e087122.full
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