Arnold, Susanne, Fernando, Sheryl and Rees, Sophie (2022) Living with vulval lichen sclerosus : a qualitative interview study. British Journal of Dermatology . doi:10.1111/bjd.21777 ISSN 0007-0963. (In Press)

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Abstract

Background
Vulval lichen sclerosus (VLS) is a chronic inflammatory condition predominantly affecting the anogenital skin. Symptoms can be distressing and affect quality of life and everyday activities. Very little research has been undertaken to explore the experience of living with VLS from the perspective of people with the condition.

Objectives
To understand individuals’ experiences of VLS and its impact on their lives.

Participants and methods
Semi-structured remote (telephone or video) interviews were conducted with a purposive sample of 20 women living in the UK with VLS recruited via online support groups and social media. Data collection and analysis was informed by social constructionist grounded theory, using a constant comparison method.

Results
We developed three themes to interpret the experience of living with VLS: missed opportunities (participants experienced delayed diagnosis, lack of information and disempowering encounters with healthcare professionals); learning to live with a long-term condition (the amount of work involved in learning how to self-manage the disease and the impact on everyday life); a secret life (experiences of the condition were often shrouded in secrecy, and there was stigma associated with a vulval skin condition resulting in them feeling isolated and lonely).

Conclusions
Patients attending healthcare appointments with vulval complaints should be examined and LS should be considered as a diagnosis. Healthcare professionals’ awareness and knowledge of VLS needs to be improved and they should avoid language which is blaming or minimizing of patients’ experiences. VLS is a chronic condition and patients need to be supported in self-management. Support groups may be a source of support and information but can also be challenging when hearing others’ difficult experiences. Wider public health educational activities are needed to change societal attitudes towards female genitals and tackle the stigma around vulval conditions.

What is already known about this topic?
- Vulval lichen sclerosus (VLS) can have a profound impact on quality of life and self-identity but is relatively underexplored from the perspective of those living with the condition.
What does this study add?
- In-depth findings about the experiences of living with VLS including ongoing issues with timely diagnosis, learning to live with a long-term condition and the secrecy and stigma about the condition.
- The needs of women with symptoms of and diagnoses of VLS are not being met sufficiently by the healthcare system.
What are the clinical implications of this work?
- Healthcare professionals should consider addressing knowledge gaps in vulval conditions including VLS to prevent delayed diagnosis and avoid the use of certain terminology which can minimize patients’ experiences.
- Patients with vulval complaints should be examined and LS should be considered as a diagnosis.
- Regular follow-up would reflect its chronic nature and could provide patients with reassurance and confidence in self-management.
- Wider public health activities are needed to change societal attitudes and tackle stigma around vulval conditions.

Item Type:	Journal Article
Subjects:	R Medicine > RG Gynecology and obstetrics
Divisions:	Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Clinical Trials Unit Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Vulva -- Diseases, Dermatology, Vulva -- Diseases -- Treatment, Scleroderma (Disease)
Journal or Publication Title:	British Journal of Dermatology
Publisher:	Wiley-Blackwell Publishing Ltd.
ISSN:	0007-0963
Official Date:	2022
Dates:	Date Event 2022 Published 22 August 2022 Available 12 July 2022 Accepted 6 May 2022 Submitted
DOI:	10.1111/bjd.21777
Status:	Peer Reviewed
Publication Status:	In Press
Access rights to Published version:	Open Access (Creative Commons)
Date of first compliant deposit:	23 August 2022
Date of first compliant Open Access:	23 August 2022
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID ES/T005939/1 [ESRC] Economic and Social Research Council http://dx.doi.org/10.13039/501100000269

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