PS21 Analysis of cumulative life course impairment in tertiary hidradenitis suppurativa care: assessment of cause of clinical burden in an English cohort

Abstract

Hidradenitis suppurativa (HS) is a devastating autoinflammatory condition causing both physical disfigurement and emotional distress. Despite recent progress, sadly treatment options remain limited. Patients are at high risk of cumulative life course impairment (CLCI), a concept that embraces the collective impact of the physical, social and emotional components of a given disease over time. The DermCLCI-r questionnaire is a novel tool created to measure CLCI retrospectively and is undergoing validation in English. This study presents insights from the English-language validation study of DermCLCI-r in tertiary care patients with HS, correlating it with clinical and quality-of-life data. In total, 62 tertiary care patients with HS were assessed using International Hidradenitis Suppurativa Severity Score System (IHS4), Dermatology Life Quality Index (DLQI) and DermCLCI-r. The study population included 82% female patients. The mean age was 40.9 years and the mean age at first symptoms was 23 years. The mean IHS4 score was 11.6, and 44% were on biologic therapy. Overall, 94% experienced at least one high-burden item (defined as ‘quite’ or ‘very’ burdensome) due to their disease, with each patient experiencing an average of 12.4 high-burden items. The majority of patients exhibited life-changing disease burden from 14 of 25 components contributing to CLCI, including ‘impairments in the choice of clothing’ (83%), ‘limitations in physical performance’ (77%), ‘nervousness, anxiety or tension’ (75%), ‘shame’ (73%), ‘impairments in sexual life’ (64%), ‘dejection, melancholy or hopelessness’ (55%) and ‘impairments in professional life/training’ (53%). Total scores for the DermCLCI-r tool correlated significantly with total DLQI score (r = 0.53; P < 0.001). CLCI is a major issue in tertiary care patients with HS, representing significant multifactorial disease burden impacting physical and mental health, personal relationships and professional life for most patients. This highlights the need for early and effective interventions and the need for holistic multidisciplinary approach to care, including clinical psychology and occupational health. Future work will focus on validating the DermCLCI-r tool longitudinally, measuring CLCI in HS across a wider range of disease severity.