A systematic review of the barriers to diagnosis of vulval lichen sclerosus in primary care.

BACKGROUND

Vulval lichen sclerosus (VLS) is a chronic, inflammatory genital skin condition causing itch, pain, anatomical changes and increased risk of vulval cancer. Diagnostic delay and misdiagnosis are common. Once diagnosed, VLS can be effectively treated using very strong topical corticosteroids. Most women with symptoms of VLS first present to primary care in the UK.

OBJECTIVES

To identify patient and professional perspectives on barriers to diagnosis of VLS in primary care through systematic review and thematic synthesis of the literature.

METHODS

Separate literature searches of seven databases relevant to patient and professional perspectives were conducted. Two reviewers screened titles and abstracts, with one performing a full text review. Data extracted were coded 'line by line', codes were organized into descriptive themes and subsequently developed into analytical themes.

RESULTS

We identified 2468 references; a total of 56 studies met inclusion criteria. Six analytical themes were developed: (i) a medically challenging diagnosis; (ii) cultural and social taboos; (iii) education and knowledge gaps; (iv) feelings and attitudes; (v) inadequate health systems; and (vi) challenges in female genital examination.

CONCLUSIONS

This review highlights obstacles for women in achieving a diagnosis of VLS. Education and knowledge gaps were reported by clinicians and patients. Clinicians lack knowledge of vulval skin disease and patients lack knowledge of vulval anatomy. Targeted, comprehensive education for clinicians could expedite diagnosis. Dismissive clinician attitudes compound patient feelings of anxiety and embarrassment, reinforcing taboos and stigma. Acknowledgement of embarrassment and stigma validates feelings, improving patient interactions. Future research priorities should include the development of a diagnostic tool and implementation of a complex intervention to expedite diagnosis.