Living with vulval lichen sclerosus : a systematic review

Lichen sclerosus (LS) is an under-researched disorder, particularly from the perspective of individuals who have the condition. A recent James Lind Alliance Priority Setting Partnership identified uncertainties in many aspects of the condition, including its impact on quality of life which was ranked within the ‘Top 10’ future research priorities.We set out to systematically review the qualitative literature exploring the lived experience of vulval LS (for the full protocol see PROSPERO ID:CRD42018106947). In PICO terms, the population was adults with vulval LS, there was no intervention nor comparator, and the outcomes were as follows. Firstly, we wanted to explore how LS affects various dimensions of everyday life and self-identity. Secondly, we wanted to explore the lived experience of the diagnosis and treatment. A better understanding of these issues will help healthcare providers to improve care, and enable researchers to identify key patient-focused research questions.