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Research Article
Lucy Biddle
University of Bristol
Corresponding Author
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This work is licensed under a CC BY 4.0 License. Read Full License
Background Vulval lichen sclerosus (VLS) is a common condition. Despite this, there is a paucity of research investigating the impact on women’s lives. Some women with VLS utilise online forums to discuss their priorities and concerns. This dialogue gives insight into the experiences of women living with VLS.
Methods We identified the most popular public forums containing discussions between women with VLS. Inductive, thematic analysis was applied to 202 online posts spanning a six-year period.
Results Five key themes were identified. Theme 1 pertained to difficulties with diagnosis. Women experience frequent delays and misdiagnosis. They report health care professionals (HCPs) with poor knowledge of their condition and some that were dismissive of their symptoms. Upon diagnosis women expressed relief and frustration. Theme 2 related to rationalisation and validation of their experience. Women expressed a desire to know why they were affected, what caused their symptoms and gain reassurance. Theme 3 dealt with women’s motivation to control their condition. Women want to know what triggers a flare-up so they can limit their relapses. They want to self-manage their condition and have an active role in partnership with HCPs. Theme 4 related to women sharing and seeking advice from the forums. The lived experiences of other women is valued by fellow sufferers. In particular, women are keen to try other treatments, conventional and alternative. The final theme related to the social repercussions of the condition. Sociocultural factors may prevent women from talking about their condition to friends, family and HCPs. They feel embarrassed by their symptoms. Some women reported relationship breakdown as a repercussion of the disease.
Conclusions Improving the knowledge of HCPs with regards to VLS may reduce problems with diagnosis. In addition, delivering improved women’s health education in schools may reduce the taboo attached to women’s health. This may empower women to talk about their condition and seek help sooner. Once diagnosed, clinicians with the appropriate expertise should care for women with VLS. Women should be encouraged to take an active role in managing their condition in partnership with clinicians. Future research priorities include identifying the aetiology, triggers for flare-ups and novel therapies.
Keywords
vulval dermatoses, lichen sclerosus, women’s health, patient experience, health inequalities, thematic analysis, online research, online forums, sexual health, social isolation, peer support, self-management, patient-centred care.
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CURRENT STATUS: Published
View the published article at BMC Women's Health.
Version 1
Posted 11 Dec, 2020
No community comments so far
Editorial decision: Major revision
On 10 Jan, 2021
Reviews received
Received 20 Dec, 2020
Reviewers agreed
On 20 Dec, 2020
Reviews received
Received 17 Dec, 2020
Reviewers agreed
On 09 Dec, 2020
Reviewers invited
Invitations sent on 09 Dec, 2020
Editor assigned
On 09 Dec, 2020
Editor invited
On 09 Dec, 2020
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On 09 Dec, 2020
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See the published version of this preprint at BMC Women's Health.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research Article
Lucy Biddle
University of Bristol
Corresponding Author
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at BMC Women's Health.
Version 1
Posted 11 Dec, 2020
No community comments so far
Editorial decision: Major revision
On 10 Jan, 2021
Reviews received
Received 20 Dec, 2020
Reviewers agreed
On 20 Dec, 2020
Reviews received
Received 17 Dec, 2020
Reviewers agreed
On 09 Dec, 2020
Reviewers invited
Invitations sent on 09 Dec, 2020
Editor assigned
On 09 Dec, 2020
Editor invited
On 09 Dec, 2020
Submission checks complete
On 09 Dec, 2020
First submitted
On 04 Dec, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at BMC Women's Health.
Background Vulval lichen sclerosus (VLS) is a common condition. Despite this, there is a paucity of research investigating the impact on women’s lives. Some women with VLS utilise online forums to discuss their priorities and concerns. This dialogue gives insight into the experiences of women living with VLS.
Methods We identified the most popular public forums containing discussions between women with VLS. Inductive, thematic analysis was applied to 202 online posts spanning a six-year period.
Results Five key themes were identified. Theme 1 pertained to difficulties with diagnosis. Women experience frequent delays and misdiagnosis. They report health care professionals (HCPs) with poor knowledge of their condition and some that were dismissive of their symptoms. Upon diagnosis women expressed relief and frustration. Theme 2 related to rationalisation and validation of their experience. Women expressed a desire to know why they were affected, what caused their symptoms and gain reassurance. Theme 3 dealt with women’s motivation to control their condition. Women want to know what triggers a flare-up so they can limit their relapses. They want to self-manage their condition and have an active role in partnership with HCPs. Theme 4 related to women sharing and seeking advice from the forums. The lived experiences of other women is valued by fellow sufferers. In particular, women are keen to try other treatments, conventional and alternative. The final theme related to the social repercussions of the condition. Sociocultural factors may prevent women from talking about their condition to friends, family and HCPs. They feel embarrassed by their symptoms. Some women reported relationship breakdown as a repercussion of the disease.
Conclusions Improving the knowledge of HCPs with regards to VLS may reduce problems with diagnosis. In addition, delivering improved women’s health education in schools may reduce the taboo attached to women’s health. This may empower women to talk about their condition and seek help sooner. Once diagnosed, clinicians with the appropriate expertise should care for women with VLS. Women should be encouraged to take an active role in managing their condition in partnership with clinicians. Future research priorities include identifying the aetiology, triggers for flare-ups and novel therapies.
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