HSF - Morbidity of Hidradenitis Suppurativa (HS)

“HS is a distressing condition for many patients and is one of the worst that has been systematically studied in dermatology.”
P. Wolkenstein et al 2006

The wide, unpredictable and non-linear progression of HS may lead to significant long-term adverse effects on mental and physical health, severely reducing the quality of life. Those with HS often fail to receive appropriate, empathic recognition for a disease that is largely invisible, as it appears mostly in and around the intimate areas of their bodies.

HS is difficult to live with as it is so often resistant to therapy. Depression, frustration and anxiety are common as is withdrawal from social, work and sexual relationships due to chronic pain, restricted mobility, persistent draining lesions and the need to change clothes and dressings. Additionally, the economic impact of HS may be substantial. Even in mild to moderate HS, time off from work has been estimated to be up to 50% higher than average, and sometimes it is difficult to maintain employment. Health insurance is often inadequate or unavailable, which adds to the financial burden of the disease. Severe HS may also lead to temporary or permanent disability.

For more information, the HSF provides the following free articles, thanks to the generosity and permission of the publishers and authors:

2007 Quality of Life Impairment in 61 HS Cases by Pierre Wolkenstein et al. [1]

2001 Morbidity of Hidradenitis Suppurativa by Jan von der Werth et al. [2]

Expert Medical Perspectives
General Impairment and Diagnostic Difficulty: In general, those with HS are otherwise healthy, however self-reported level of health is often poor, resulting in difficulties in work and leisure activities. For the majority of those with HS, the worst years are the first 10-15 years after onset of disease. HS is noted to occur more frequently in women. Shorter menstrual cycles and longer duration of menses have been noted, causing chronically recurring discomfort and distress in addition to the frequently described premenstrual and menstrual flaring of HS. Most of those with HS do not appear to progress to severe disease, however the disease states in Stages I and II (See Treatment) often cause significant pain and scarring. The morbidity of HS in Stages I and II is compounded by the fact that medical professionals often overlook or fail to diagnose and adequately treat all but the most severe forms of HS, leaving those with HS in Stages I and II without treatment for many years. [4]

Morbid Features of HS and Its Treatment: Apart from the primary clinical features of HS (See What is HS?), secondary and tertiary lesions of HS lead to increased morbidity, physical disability, discomfort, psychologic distress and pain. These morbid features include permanent foul smelling discharge from sinus tracts, tissue destruction, fibrosis, multiple pyogenic granulomas, hypertrophic fibrous scarring which forms honeycomb structures under the skin and/or forms thick linear rope-like bands (making it difficult to raise the arm for instance). Discharge from HS lesions are often found to be sterile, however polymicrobial bacterial colonization commonly occurs within sinus tracts which can lead to offensive smelling discharge, infection, cellulitis and superinfection. The common medications used to treat HS, as is found in other diseases, often result in undesired side-effects, complications and sometimes additional disease. Complications from surgical treatments for HS include rupturing of sutures, wound separation, post-operative bleeding and bruising, loss of flap or skin graft, local wound and septic infections, scar formation and contractures, loss of function and mobility and recurrent disease following surgery at or near the surgical site or in a different location. In cases of severe and untreated HS, ulceration and abscesses may perforate muscles and fascia forming fistulas to the rectum, urethra and vagina. Those with long-lasting suppuration may have complications such as anemia, hypoproteinemia and amyloidosis leading to a rarely described wasting syndrome. Other infrequently described complications in those with HS include lymphatic obstruction and lymphoedema of the limbs and genitalia. [4]

Associated Diseases: A number of diseases have been noted to co-occur in the same person with HS
and these add considerably to an individuals overall disease burden, complicating the diagnosis and treatment of HS and significantly reducing life quality. These co-occurring diseases include Crohn's disease, pilonidal cyst/sinus, bacterial colonization of HS lesions, bone and joint disease, skin cancers, acne conglobata, dissecting cellulitis of the scalp, acne vulgaris and Dowling-Degos disease. Bone and joint or rheumatological manifestations of HS include arthritis, ankylosing spondylitis and enthesopathy (inflammation at the site of ligaments and fasciae insertion over the bone). A Swedish study suggests those with HS may be 50% more at risk for developing any cancer. Squamous cell carcinoma
(Marjolin's ulcer) is a rare occurrence in areas of longstanding HS. Suspect HS lesions should therefore be biopsied. [4]

Hospital Admission Principal Diagnosis: An analysis of American hospitalization records shows that more patients with HS receive a principal diagnosis – the chief reason for the hospital stay – than those with psoriasis. This indicates that HS has a much higher morbidity than other dermatoses such as psoriasis. [5]

Quality of Life Studies: Questionnaires of QoL are well tolerated by patients and allow one to evaluate the burden of HS and to compare it with other diseases. They have demonstrated that the impact of HS is probably the greatest encountered in chronic diseases in dermatology. These results are important for recognition of the disease and the lobbying of lay groups. These questionnaires should be used when accounting for patients’ viewpoints during follow-up and therapeutic trials. [6]