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Living with vulval lichen sclerosus: A mixed methods study

与外阴硬化性苔藓一起生活：一项混合方法研究

基本信息

批准号：
ES/T005939/1
负责人：
Sophie Rees
金额：
$ 31.03万
依托单位：
University of Warwick
依托单位国家：
英国
项目类别：
Research Grant
财政年份：
2020
资助国家：
英国
起止时间：
2020 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=ES%2FT005939%2F1
关键词：
Living vulval lichen sclerosus mixed

项目摘要

Lichen sclerosus (LS) is a chronic skin condition which affects the skin around the genitals. This project is about vulval LS, which affects the skin around the outside of the vagina. LS causes intense itching and small painful cuts in the skin, and people with LS may feel embarrassed and alone. It can cause problems for normal activities such as going to the toilet, sitting or walking, and having sexual intercourse. LS is a lifelong condition - there is no cure. Treatment with steroid ointment usually helps reduce symptoms, but does not work for everyone. Some women may need surgery if they have a lot of scarring.There is very little research about vulval LS. In 2018, researchers, patients, and health professionals determined the top priorities for LS research. They put 'Understanding the impact of LS on quality of life' in the top ten. In this study we will explore what it is like to have vulval LS, how people usually access diagnosis and care, and how it affects their quality of life. We will also explore the views of women with LS of issues related to future clinical trials on the topic. This is because in order to answer many of the priorities identified in 2018, clinical trials will be needed. However, we do not know whether women would take part, and what would be important to them in a clinical trial.We will invite women with LS to take part in an interview about their experiences and views. We will give people the option of a telephone interview if they do not want to speak to a researcher face-to-face. We will invite women to focus groups to explore feelings about the current recommended treatment (putting steroid ointment on the affected area). We will use the results from all of this to design a questionnaire for women with LS to answer. This means we will be able to ask lots of people the same questions, and that people who did not want to take part in an interview will be able to tell us about their experience. Questions will be about what areas of their life are affected by LS and how they accessed diagnosis and treatment.We will also work with an artist to create artwork based on the research findings. At the end of the study, we will hold an event at which we display this artwork and hold a discussion between people with LS and healthcare professionals.Four women with LS have joined a 'lay advisory group'. This group will meet several times during the research to give input into the study design, such as designing the interview questions, and helping us share the findings.

硬化性苔藓(LS)是一种影响生殖器周围皮肤的慢性皮肤病。这个项目是关于外阴LS，它影响到阴道外部的皮肤。LS会在皮肤上引起强烈的瘙痒和微小的疼痛伤口，LS患者可能会感到尴尬和孤独。它会给正常的活动带来问题，比如上厕所，坐着或走路，以及发生性行为。LS是一种终生疾病--没有治愈的方法。使用类固醇软膏治疗通常有助于减轻症状，但并不是对每个人都有效。一些女性如果有很多疤痕可能需要手术。关于外阴LS的研究很少。2018年，研究人员、患者和卫生专业人员确定了LS研究的首要任务。他们把“了解LS对生活质量的影响”排在前十名。在这项研究中，我们将探索患有外阴LS是什么感觉，人们通常如何获得诊断和护理，以及它如何影响他们的生活质量。我们还将探讨LS女性对未来临床试验相关问题的看法。这是因为，为了回答2018年确定的许多优先事项，将需要进行临床试验。然而，我们不知道女性是否会参加临床试验，以及什么对她们来说是重要的。我们将邀请患有LS的女性参加采访，了解她们的经历和看法。如果人们不想与研究人员面对面交谈，我们将允许他们选择电话采访。我们将邀请女性参加焦点小组，探讨对目前推荐的治疗方法(将类固醇软膏涂在受影响区域)的感受。我们将使用所有这些结果来设计一份调查问卷，供患有LS的女性回答。这意味着我们将能够向许多人提出同样的问题，而那些不想参加面试的人将能够告诉我们他们的经历。问题将是关于他们生活的哪些领域受到LS的影响，以及他们如何获得诊断和治疗。我们还将与一位艺术家合作，根据研究结果创作艺术品。在研究结束时，我们将举办一个活动，在那里我们展示这件艺术品，并在LS患者和医疗保健专业人员之间举行讨论。四名LS患者加入了一个“外行咨询小组”。该小组将在研究期间召开几次会议，为研究设计提供意见，如设计面试问题，并帮助我们分享结果。