Suffering in Silence: Understanding the Hidden Impact of Hidradenitis Suppurativa on Quality of Life

Original Article: Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes

What are the key takeaways of this article?

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition that results in painful nodules, abscesses, and scarring, primarily in areas like the armpits and groin. Its impact on patients' health-related quality of life (HRQoL) is profound, stemming from symptom burden, delays in diagnosis, limited treatment access, and comorbidities. For this reason, dermatologists consider HS one of the most distressing dermatological diseases. A recent systematic review evaluated 58 observational studies, primarily cross-sectional, focusing on pain, pruritus, psychological impact, sexual health, work productivity, and overall HRQoL in HS patients.

The review identified 1449 records, of which 58 observational studies were included after rigorous screening. These studies, spanning from 2010 to 2021, primarily comprised high-quality research, providing reliable insights into the impact of HS on HRQoL. Sample sizes varied, with the majority including both adults and adolescents, with a higher representation (70%) of female patients. Disease severity, ranging from moderate to severe, was reported in a significant proportion of the studies.

Pain, the most debilitating symptom of HS, was assessed by 25 studies using various instruments such as a numeric rating scale and a visual analogue scale. Mean baseline pain scores were high, indicating substantial suffering among HS patients. Notably, pain scores tended to be higher in female patients and severe cases of HS.

Pruritus, although assessed in fewer studies, was found to be a significant concern among HS patients, correlating with insomnia and impacting sexual health. Moreover, 13 of the included studies assessed the psychological impact of HS, revealing a negative effect on patients' psychological well-being. Elevated scores related to depression and anxiety were observed across various patient-reported outcome instruments, indicating a substantial burden of mental health issues among HS patients.

The sexual impact of HS was assessed in three of the included studies, all of which reported a significant negative effect on the sexual health of patients compared to healthy individuals. This impact was particularly pronounced in women, with a high proportion experiencing sexual dysfunction. Factors contributing to sexual impairment included disease activity, symptoms, and active lesions, with pain and unpleasant odor cited as significant contributors.

Work productivity and activity impairment due to HS were also notable. A significant percentage of employed adults experience absenteeism, with an average of 33.7 ± 34.3% of work time missed due to HS-related issues. Moreover, overall work impairment and decreased productivity were substantial among these individuals. These findings suggest the need for interventions to address the work-related challenges faced by individuals with HS, ultimately improving their ability to participate in employment and enhancing their overall quality of life.

In summary, the findings from this systematic review highlight the significant impact of HS on patients' lives, indicating a pressing need for enhanced disease management strategies. The authors reveal that various aspects of patients' well-being are significantly affected by HS, including pain, pruritus, psychological well-being, sexual health, work productivity, and overall HRQoL. These effects are particularly pronounced in cases of moderate to severe HS. Thus, comprehensive approaches addressing these multifaceted impacts are crucial for improving the management and quality of life for individuals living with HS.

Publication Date: May 19th, 2024

Reference: Kimball, A.B., Kirby, J., Ingram, J.R. et al. Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes. Dermatol Ther (Heidelb) 14, 83–98 (2024). https://doi.org/10.1007/s13555-023-01085-wv

Summary By: Megan Lowe