Quality of Life in Vulval Lichen Sclerosus Patients Treated with Long-Term Topical Corticosteroids

Vulval lichen sclerosus (VLS) is a chronic inflammatory dermatosis of the vulva, most commonly affecting women in peri- and post-menopausal years. Providing adequate treatment is vital in VLS given its serious potential for scarring and malignancy. While topical corticosteroids (TCS) are widely acknowledged as the gold standard of treatment in VLS, their duration of administration has long been a controversy. In recent years, there is an increasing amount of robust evidence demonstrating that long-term, individualised TCS therapy is safe and reduces the risks of disease progression and relapse in VLS. What remains unknown is the quality of life (QoL) in patients receiving the treatment regimens. The aim of this thesis is to fill this important gap in knowledge, as understanding treatment satisfaction from patient’s perspective is an integral part of every disease management. Two cross-sectional QoL studies are encompassed in this thesis, both of which utilised a multi-domain, validated QoL assessment tool specific for vulval diseases, the Vulval Quality of Life Index (VQLI). The first study investigated QoL in exclusively untreated VLS patients to provide insights into patient baseline pre-treatment. Sixty-eight untreated VLS patients were identified. The results showed that untreated patients experienced significant impairment in all areas of the VQLI. Approximately half had already developed vulval scarring at the time of diagnosis. The findings emphasise the importance of improved awareness, early diagnosis and prompt commencement of treatment in VLS. The second study examined QoL in 136 VLS patients treated with long-term, individualised TCS for two years or longer compared to 68 new, pre-treatment patients. The treatment group scored significantly lower in total score (median 2.0 [IQR 0.0–6.0] vs 13.5 [IQR 7.5–22.0]; p<.001), and all VQLI domains, namely symptoms (median 0.5 [IQR 0.0-0.5] vs 1.3 [IQR 0.8–2.0]; p<.001), anxiety (median 0.0 [IQR 0.0-0.3] vs 0.8 [IQR 1.1–2.0]; p<.001), activities of daily living (median 0.2 [IQR 0.0-0.3] vs 0.5 [IQR 0.2–1.1]; p<.001), and sexuality (median 0.0 [IQR 0.0–0.7] vs 1.0 [IQR 0.0–2.0]; p<.001), indicating a higher QoL satisfaction. As high as 72.1% of treated patients reported VLS had nil to minimal impact on their QoL, compared to only 11.8% in the pre-treatment group (p<.001). Side effects were only developed in 11 (8.1%) patients, all of which were mild and resolved following adjustment to TCS potency. Partially compliant patients achieved worse treatment outcomes and were twelve times as likely to develop scarring progression than fully compliant patients (7 [22.6%] vs 2 [1.9%]; p<.001). The results of this study demonstrated the safety profile of long-term individualised TCS regimens and their utility in improving VLS patients’ QoL and maintaining disease remission