HSF - Hidradenitis Suppurativa (HS) Assessment

“Patients often find it a debilitating and embarrassing disease with a high degree of morbidity; and at the same time treating physicians generally find it a difficult disease to treat. Patients therefore hide their disease and choose to suffer in silence rather than to seek help. Physicians similarly often adopt a reductionist approach rather than seeking insight in the face of the clinical challenge.”
Jemec, Revuz, Leyden 2006

From 1996 to 2007 there has been a slow development of HS-specific tools for objectively and subjectively assessing and measuring this disease over time. The expert recommendation is that HS needs to be classified into one of three stages and objective and subjective data on the evolution of HS needs to be recorded over time using standard Dermatology Quality of Life measurements (DLQI/Skindex), a visual analog scale for pain, and use of the Modified Sartorius Scale in order to accurately record loco-regional severity of the disease over time [6]. Increased global use of the Modified Sartorius Scale will aid in the validation of these standard assessment tools as a means to reproduce satisfactory data on treatments which aggravate or relieve HS. Additional objective evidence can be gained by the photography and ultrasound imaging of affected areas. [1-6].

Assessment tools for HS have developed in spite of, and perhaps even because of, a lack of standardized criteria for what exactly constitutes HS. Comparing the efficacy or lack of success of treatments for HS between studies is problematic if studies do not disclose a diagnostic methodology. There has been no global consensus on how to diagnose HS, and therefore no studies performed which validate criteria for the diagnosis of this mysterious disease. This lack of uniformity and consensus needs to be resolved by the collection of standard data via recommended assessment tools, and perhaps from this data, standard diagnostic criteria for HS could be developed. Until such time, it is essential that treating physicians and researchers include their diagnostic criteria in patient medical records, published case reports, presentations, clinical trials and studies.

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]

1992 Dermatology Life Quality Index by Andrew Finlay et al. [2]

Expert Medical Perspectives
QOL conclusion for physicians: The analysis of QoL measures confirms the strong impact of HS. A subgroup of patients seems to be more affected; namely, patients with an early onset of their disease, with a long disease duration, with continuous evolution and with a predominately pelvic location. Future trials should be targeted on this subgroup. The impact upon QoL is strongly correlated with pain. Therefore, criteria of treatment evaluation should include, in addition to the standardized physician’s report, the patient’s viewpoint obtained with at least a dermatological QoL questionnaire and the pain VAS. [5]

Acknowledgments & References
[1] Wolkenstein P, Loundou A, Barrau K, Auquier P, Revuz J. Quality of life impairment in hidradenitis suppurativa: A study of 61 cases. J Am Acad Dermatol. 2007 Apr; 56(4):621-623. (Reprinted online with permissions from the primary author and The American Academy of Dermatology, Inc. This article is subject to copyright and may not be reproduced, distributed or published, in whole or in part, in any form without the permission of the publishers).