Exploring the Impact of Fatigue and Sleep Disturbance in Hidradenitis Suppurativa: Perspectives from Patients and Healthcare Professionals

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that affects physical, social and emotional aspects of life for people living with HS (plwHS). Although many plwHS consider pain the most bothersome symptom, fatigue and sleep disturbance are underexplored in research and rarely discussed in clinical practice. This article shares perspectives from plwHS and people working with patients, including healthcare professionals (HCPs), from Europe and North America, on the impact of HS-related fatigue and sleep disturbance on quality of life (QoL). Fatigue was described as a debilitating symptom affecting QoL, with HCPs often noting that plwHS were unaware of the full impact of fatigue until treatment improved their HS symptoms. Sleep disturbance was mainly attributed to HS-related pain, pruritus and lesion drainage, with sleep deficits accumulating over time. The strain of HS impacted personal relationships, with plwHS expressing less interest in social interactions or intimate relationships, leading to feelings of guilt, failure, isolation and reduced self-esteem. Fatigue and sleep disturbance also affected work productivity, and consequently, career progression and financial stability. Recognizing the multifaceted HS symptoms, providing reasonable adjustments in the workplace, encouraging open dialogue with HCPs and measuring fatigue with a validated instrument could help improve QoL of plwHS.