Hidradenitis suppurativa (HS) is a chronic skin disease, with painful, foul-smelling, recurring inflammation, leading to a diminished quality of life. Patients with HS also often suffer from depression, have an impaired sexual health, and may have difficulty performing their work duties.
Key points
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Multiple studies have shown a diminished quality of life (QoL) in patients with hidradenitis suppurativa (HS).
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The prevalence of depression in HS ranges from 6% to 39%.
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The painful inflammation and disfiguring scars can have great impact on the sexual life of patients with HS.
Introduction
HS is a debilitating disease, because of its chronic course characterized by relapsing painful inflammatory nodules in intimate places such as the groin, pubic area, submammary area, and axillae. The inflammation not only is painful but also can cause malodorous discharge leading to soiling of cloths, and the lesions are also unsightly and deforming. A diagnosis of HS comes with many uncertainties; the course of the disease is unknown, as is whether the disease will flare up or if patients ever will be free of inflammation. There remains a great unmet need for better therapy, and as of today, a cure is distant. Combining these factors, it is hardly surprising that HS has a negative impact on the QoL of patients. Even though the impact of HS has gained more attention recently, only a dozen articles have been published on this subject, most of which have occurred in the past 5 years. Ingram and colleagues investigated which topics should get priority in research in the next few years. The topic “the impact of HS and its treatment on people with HS (physical, psychological, financial, social, quality of life)” ranked third, confirming that the handicap of HS should gain substantially more attention in current research.
With these limitations in mind, in this article the authors give an overview of the known impact of HS on QoL, the prevalence of depression, and the influence on the sexual life and work of patients with HS.
Introduction
HS is a debilitating disease, because of its chronic course characterized by relapsing painful inflammatory nodules in intimate places such as the groin, pubic area, submammary area, and axillae. The inflammation not only is painful but also can cause malodorous discharge leading to soiling of cloths, and the lesions are also unsightly and deforming. A diagnosis of HS comes with many uncertainties; the course of the disease is unknown, as is whether the disease will flare up or if patients ever will be free of inflammation. There remains a great unmet need for better therapy, and as of today, a cure is distant. Combining these factors, it is hardly surprising that HS has a negative impact on the QoL of patients. Even though the impact of HS has gained more attention recently, only a dozen articles have been published on this subject, most of which have occurred in the past 5 years. Ingram and colleagues investigated which topics should get priority in research in the next few years. The topic “the impact of HS and its treatment on people with HS (physical, psychological, financial, social, quality of life)” ranked third, confirming that the handicap of HS should gain substantially more attention in current research.
With these limitations in mind, in this article the authors give an overview of the known impact of HS on QoL, the prevalence of depression, and the influence on the sexual life and work of patients with HS.
Quality of life
HS can have a profound influence on QoL. Owing to pain, patients are unable to perform their everyday tasks, go to work, or enjoy sports. In addition, patients feel often embarrassed because of the malodorous inflammation and often hide the disease even from close relatives.
Dermatology-Specific Quality of Life Questionnaires
QoL is generally assessed using questionnaires. There are 2 commonly used specific dermatologic QoL questionnaires, namely, the Dermatology Life Quality Index (DLQI) and the Skindex-29.
The DLQI was published in 1994 by Finlay and Khan and consists of 10 questions concerning symptoms and feelings, daily activities, leisure, work and school, personal relationships, and treatment. Patients can answer with “not at all,” “a little,” “a lot,” or “very much,” resulting in a score from 0 to 3 for every question. A total score of 0 to 1 indicates no effect on QoL, 2 to 5 a small effect, 6 to 10 a moderate effect, 11 to 20 a very large effect, and 21 to 30 an extremely large effect.
The Skindex-29 questionnaire consists of 29 questions about 3 domains, namely, emotions, symptoms, and functioning. An additional item addresses the side effects of medication and treatment. Each item results in a score between 0 and 100. The domain scores are the average scores of the items within that domain. Cutoff scores for severe impaired health-related quality of life (HRQoL) for the specific domains are greater than or equal to 52 points on symptoms, greater than or equal to 39 on emotions, and greater than or equal to 37 on functioning. The total score can also be used, although less frequently. A total score more than 44 indicates a severe impaired HRQoL.
Quality of Life in Patients with Hidradenitis Suppurativa
All studies performed on QoL in patients with HS to date report a diminished QoL. Most studies that used the DLQI report an average score between 8 and 13, indicating that HS has a moderate to very large effect on the QoL ( Fig. 1 ). Studies that used the Skindex-29 questionnaire showed scores between 52.6 and 59.2 for the emotional domain, 52.2 and 55.6 for symptoms, and 45.9 and 48.8 for the functional domain. The only population-based study reported a much lower impact on QoL with a DLQI of 3.7 and a Skindex-29 total of 19.7. However, they used self-reported diagnoses, based on diagnostic questions about HS, psoriasis, pimples, hand rash, atopic eczema, and chronic leg ulcers. Even though this study showed that all dermatologic patients had higher DLQI scores than the controls, with patients with HS having the highest mean score of 3.7, these scores were still substantially lower than in the hospital-based studies.
Causes of Low Quality of Life in Hidradenitis Suppurativa
When examining predictors of low QoL, young age of onset and more lesions per month are associated with higher DLQI and Skindex scores, and the severity of HS is strongly associated with a lower QoL. On the DLQI, Hurley stage I patients scored between 2.8 and 5.7 and Hurley stage II patients scored between 8.3 and 13.10, whereas in Hurley stage III patients, the scores ranged from 17.6 to 20.4, indicating a very large effect on the patient’s QoL. In addition, the Sartorius score, which is used more nowadays, also showed to have a significant correlation with the DLQI scores.
The DLQI questions that scored the highest were: “how itchy, sore, painful, or stinging has your skin been” and “how much has your skin influenced the clothes you wear,” indicating that the pain, discomfort, and embarrassment are important factors diminishing QoL. Analyzing the Skindex-29 scores, in the symptom domain, the highest scores were obtained from items about sensitive, irritated, and painful skin. On the emotional domain, patients felt annoyed and angry about having HS and were worried that the HS would get worse. On the functional domain, fatigue scored the highest. This result was consistent with that of the work by Matusiak and colleagues confirming that fatigue is a prevalent problem in patients with HS. They found that almost 40% of the patients with HS had clinically significant fatigue, with a strong correlation between the Hurley stage and the level of fatigue.
Quality of Life in Hidradenitis Suppurativa Versus Other Dermatologic Diseases
In direct studies comparing DLQI scores of patients with HS with other dermatologic patients or controls, patients with HS tended to have the highest scores reported across the groups. Onderdijk and colleagues compared the DLQI scores of patients with HS with patients with acne, eczema, psoriasis, skin tumors, and other skin diseases and found that patients with HS had significantly higher scores than these other dermatologic patients. However, when analyzing larger-scale studies using DLQI scores in patients with skin diseases, Basra and colleagues compared the DLQI scores of 45,710 patients from 220 different studies ( Fig. 2 ). HS registered with a mean score of 13.3, as one of the highest. Only burns (scars) (17.8), erythropoietic protoporphyria (14.0), and hirsutism (13.4) scored higher suggesting that HS belongs in the top 5 skin diseases with the most negatively affected QoL scores.
Related posts:
Prevalence, Risk Factors, and Comorbidities of Hidradenitis Suppurativa
Diagnosing Hidradenitis Suppurativa
The Genetics of Hidradenitis Suppurativa
Inflammatory Mechanisms in Hidradenitis Suppurativa
Randomized Controlled Trials for the Treatment of Hidradenitis Suppurativa
Imaging of Hidradenitis Suppurativa
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