WVHS
Research type
Research Study
Full title
Welsh Vulval Health Survey
IRAS ID
308336
Contact name
Charity J. Knight
Contact email
Sponsor organisation
Swansea Bay University Health Board- Research and Development
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Summary of Research
The aim of our study is to identify all women who have been diagnosed with a vulval health condition within the gynaecology service in Wales and invite them to complete the first Welsh Vulval Health Survey.
Diseases of the vulva (female external genitalia) make up a wide variety of conditions including vulval cancer and pre-cancerous changes, chronic inflammatory skin diseases, genitourinary syndrome of menopause and chronic vulval pain disorders. These conditions and their treatments can be extremely challenging, yet the effect this has on patient physical and mental health, relationship and working life as well as activities of daily life, is poorly understood. Due to the intimate nature of vulval diseases, women are often reluctant to volunteer symptoms and clinicians are often reluctant to enquire, due to a lack of experience or training.
We will conduct an anonymous questionnaire aiming to recruit all adult women who have attended a specialist vulval clinic within Wales and have been diagnosed with a vulval health condition. The questionnaire will try to determine the type and severity of the disease and the impact it has on physical and mental health, work and relationship effects and activities of daily living. The survey will be available in an electronic format (survey web address and QR code) and in paper form for those without internet access. Recruitment would have two parts: recruitment of patients attending ongoing vulval clinics over a 6 month duration and recruitment of patients who have attended clinic in the last 2 years with a postal questionnaire (in both formats) being sent out.
We believe that the results of this study will provide evidence of a need to improve vulval health services and training on a Welsh national level to improve patient care and give information for future research into vulval diseases within Wales.Summary of Results
Our study was the first ever Welsh Vulval Health Survey and we invited all women with a vulval disease, attending 5 specialist vulval clinics in Wales to complete an anonymous health questionnaire. We wanted to find out more about the type and severity of their vulval disease and how this affected their physical and mental health, relationships and working life as well as activities of daily life.
Over an 18 month period we received 242 completed questionnaires which found that most women were over the age of 50; 43% had lichen sclerosus, 14% had other inflammatory skin conditions, 14% had pre-cancerous skin changes, 4% had vulval cancer, 5% had vulvovaginal atrophy, 5% had vulval pain disorders and 14% had other conditions. The length of time women suffered with their vulval symptoms was varied with the commonest duration of 3-5 years in 29% of cases and almost 20% who had suffered for over 10 years. Symptoms when at their most bothersome were regarded as severe in 61% of women, with the commonest symptoms described as discomfort 36%; soreness 35% and itch 34%. The majority of respondents (80%) were seen by 1-3 doctors before a diagnosis was made, with 10% seeing 5 or more doctors before a diagnosis was made.
When respondents were asked if their vulval condition made activities of daily life difficult to perform: 61% found going to the toilet and having sex the most difficult; 41% found that sleep was affected; 40% reported walking as problematic; 38% found washing difficult and 29% reported that their condition had an impact on exercise.
When asked if their vulval condition had an effect on their mental health: 60% reported an effect on their mental health, with a total of 7% reporting that their vulval disorder had led them to thoughts of suicide or self-harm. When asked if their vulval condition had an effect on their working life 24% of respondents felt there was an impact on working life and 64% believed their vulval condition had an effect on their sexual relationships, with 10% preferring not to say. From looking at the data in more detail we saw a significant link between having symptoms of discomfort "constantly" and having dryness "often" and there being an effect on mental health; in women with vulval pre-cancer there appeared to be a link with suicidal thoughts and self-harm; in those with vulval pain disorder there seemed to be an effect on working life and sexual relationships.
From the results of our study it is clear that vulval diseases have a significant effect on many aspects of life. We feel that when women are being seen in clinic, they should have both physical and mental health needs addressed. We believe our study suggests a need for improved awareness and education of healthcare workers looking after women with vulval conditions throughout Wales.
We would like to thank all the patients who took part in our study.REC name
South East Scotland REC 01
REC reference
22/SS/0046
Date of REC Opinion
17 Aug 2022
REC opinion
Further Information Favourable Opinion