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Chapter 14
Quality of Life in Hidradenitis Suppurativa
Pierre Wolkenstein
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Key points
Q Quality of life is severely affected by hidradenitis suppurativa (HS)
Q Suggestions for the uniform reporting of outcome variables are available and should be used
Q Quality of life quantification should be made using validated instruments in all patients
Q Pain should be assessed at all visits using a pain visual analog scale (VAS)
#ONTENTS
14.1 Introduction . . . 116
14.2 Concept and Measure of Quality of Life . 116 14.2.1 Why Try to Measure Quality of Life? . . . . 116
14.2.2 Reporting the Viewpoint of Patients: Methods of Measurement of Quality of Life . . . 117
14.2.3 Reporting the Viewpoint of Physicians: Uniform Outcome Variables. . . 117
14.2.4 Practical Approach Reconciling the Viewpoints of Patients and Physicians . . . 117
14.3 Impact of HS upon Quality of Life . . . 117
14.3.1 Altered Self-Reported Health: Qualitative Approach . . . 117
14.3.2 Measure of Quality of Life: Quantitative Approach . . . 118
14.4 Impaired Quality of Life: What Conclusion? . . . 118
14.4.1 Conclusion for Patients . . . 118
14.4.2 Conclusion for Physicians . . . 119
References . . . 119
14.1 Introduction
Hidradenitis suppurativa (HS) is a chronically relapsing skin disorder characterized by recur- ring inflammatory lesions leading to fistulae and sclerosis of apocrine-gland-bearing areas [3]. One or several areas are affected, including the perianal region, groin, pubis, scrotum, but- tocks, inner thighs, and areola. The disease leads to painful nodules and malodorous dis- charge and the available treatments are only partially effective and unsatisfactory. Affected patients suffer a significant morbidity and it is self-evident that HS has a psychological impact especially upon quality of life (QoL) and mental health. In this chapter we will review these two aspects.
14.2 Concept and Measure of Quality of Life
14.2.1 Why Try to Measure Quality of Life?
Quality of life is a concept incorporating all fac- tors that impact upon an individual’s life [4].
The concept has been divided into several com- ponents, including psychological, social, and physical domains. All clinicians use an intuitive view of how much the disease is affecting their patients when taking management decisions, but patients may assess QoL differently from their doctors. The use of simple QoL measures is usually welcomed by patients who wish to ex- press their concerns. Methods of measuring the extent and severity of a disease are based on as- sessment of signs and symptoms. This informa- tion does not necessarily correlate with QoL measures. It is therefore important to have two
Quality of Life in Hidradenitis Suppurativa Chapter 14 117 viewpoints of a disease, the viewpoint of doc-
tors and that of patients.
14.2.2 Reporting the Viewpoint of Patients: Methods of
Measurement of Quality of Life The techniques used to measure QoL are ques- tionnaire based [4]. These measures either cover all ways in which patients’ lives can be affected by any disease, or are more specific to diseases of systems or individual diseases. In the absence of questionnaires specific to HS, two kinds can be used: general health questionnaires and skin- disease-specific questionnaires. The question- naires allow the calculation of either global scores, or a profile with a score for each dimen- sion. In our experience skin-disease-specific questionnaires are more adapted than generic questionnaires to HS.
14.2.3 Reporting the Viewpoint of Physicians: Uniform Outcome Variables
The measures of the QoL must be correlated with the severity of the disease. Recently sug- gestions for uniform outcome variables for treatment effects in HS have been reported [7]:
1. Anatomical region involved (axilla, groin, gluteal or other region or inframammary region, left and/or right: 3 points per region involved)
2. Number and scores of lesions (abscesses, nodules, fistulas, scars; points per lesion of all regions involved: nodules/abscesses 2; fistulas 4; scars 1; others 1)
3. The longest distance between two relevant lesions, i.e., nodules and fistulas, in each region, or size if only one lesion (<5 cm 2; <10 cm 4; >10 cm 8)
4. Are all lesions clearly separated by normal skin? In each region (yes 0/no 6) By assigning numerical scores to these variables, disease intensity can be quantified in a clini- cally meaning full way. A total score was calcu- lated.
14.2.4 Practical Approach Reconciling the Viewpoints of Patients and Physicians
The evaluation of patients with HS in a referral center should include QoL questionnaires, and standardized outcome variables. Pain should be evaluated with validated instruments such as visual analog score (VAS).
14.3 Impact of HS upon Quality of Life
14.3.1 Altered Self-Reported Health:
Qualitative Approach
Many dermatologists rate HS as a heart-sink condition and would agree that it ranks among the most unpleasant of skin diseases. When looking at patients’ statements about their dis- ease they emphasize that the soreness and pain are the cause of their disability. Patients suffer from embarrassment and self-consciousness caused by the frequent occurrence of boils with malodorous discharge. One study in Denmark has shown impairment of self-reported health in HS [6]: the general self-reported level of health is poorer among HS patients. The soreness, dis- charge, and appearance of lesions are described as problems for both work and leisure activities by 51% of all patients. In the same study, Jemec et al. [1996] found that patients with HS had lost an average of 2.7 days of work in 1 year specifi- cally because of HS. This suggests an overall higher morbidity, as other days lost to other causes were not included in the data. The dura- tion of 2.7 days however ranked below the aver- age number of work days lost for all reasons per employed person (7.5 days) and even further be- low the average number of days lost by patients with hand eczema (4 weeks) in a comparable population. These results suggest that patients with HS fail to get appropriate recognition for the severity of their disease. Many of them seem to suffer in silence. Indeed failure to disclose the extent or even the existence of the disease may in itself increase its severity. In the absence of visible disease no support or sympathy is elicit- ed and there is, therefore, no mitigation of suf- fering: the stigma attached to HS is because it
118 Pierre Wolkenstein
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affects predominantly intimate body parts. It has connotations of socially unacceptable be- havior or a lack of hygiene and is often concealed even from close relatives.
In France, in the context of a TNS Sofres sur- vey (unpublished data), which is deemed to pro- vide a representative sample of patients with HS, 47.2% of patients reported a medical con- sultation for their disease in the year preceding the interview, and 47.7% of the patients reported HS to be a relevant problem and a severe dis- tress.
14.3.2 Measure of Quality of Life:
Quantitative Approach
A quantitative approach for measuring QoL in HS was performed [2]. Questionnaires widely used in other skin diseases such as the Derma- tology Life Quality Index (DLQI) questionnaire, Skindex and VQ-Dermato [1, 4, 5] were chosen.
This approach allows a direct comparison of the results with those from previous studies on oth- er skin diseases. We will discuss two studies, one already published and our unpublished data [2]. In both studies, in addition to this question- naire, basic demographic data and aspects of the history of HS were collected: 114 patients par- ticipated in the first one [2] and 61 in the sec- ond. In the study of der Werth and Jemec [2] the recorded mean DLQI score was 8.9, higher than scores found in several other dermatological conditions such as alopecia, acne, psoriasis, Hailey–Hailey disease, vascular anomalies of face, and atopic dermatitis. In our center (un- published data) using two other skin-disease- specific QoL questionnaires (Skindex and VQ- Dermato) [1, 5], the scores obtained were higher than those found in chronic urticaria, psoriasis, atopic dermatitis and also neurofibromatosis 1.
The impact upon QoL was correlated with the number of active lesions and with the sever- ity of the disease. Therefore, QoL questionnaires can be used to measure the activity of the dis- ease from the viewpoint of patients and could be used in therapeutics trials as a main criterion.
In our study, three QoL questionnaires were ad- ministered and the measures obtained from each of them were strongly correlated. One can
recommend using only one questionnaire and preferably one dermatological questionnaire, such as DLQI, VQ-dermato or Skindex, which seem to be more sensitive [1, 4, 5].
The DLQI score was inversely correlated with age at disease onset [2]. It was suggested that pa- tients with late-onset disease tend to have an overall milder form of HS and a better chance of spontaneous recovery than those who develop the condition earlier in life. This is in agreement with a previous observation of the outcome of simple surgical procedures in HS, where older patients appeared to have fewer recurrences.
We used QoL questionnaires concomitantly with a VAS for pain. The QoL scores were strongly and positively correlated with the pain.
Indeed, soreness and pain are the most com- monly cited reason for impaired health in HS. It is self-evident that pain is one of the main bur- dens of patients with HS and should be taken into account as an evaluation criterion for future treatment. Patients with a long disease duration and continuous evolution were more affected than those with intermittent evolution. A pelvic location had a significantly higher impact com- pared to other locations. Indeed this location is associated with boils with a malodorous dis- charge leading to an evident physical limita- tion.
14.4 Impaired Quality of Life:
What Conclusion?
14.4.1 Conclusion for Patients
W
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 demonstrated that the impact of HS is probably the greatest encountered in chronic diseases in dermatology. These results are im- portant 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.
Quality of Life in Hidradenitis Suppurativa Chapter 14 119 14.4.2 Conclusion for Physicians
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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 evolu- tion and with a predominately pelvic location.
Future trials should be targeted on this sub- group. The impact upon QoL is strongly cor- related with pain. Therefore, criteria of treat- ment evaluation should include, in addition to the standardized physician’s report, the pa- tient’s viewpoint obtained with at least a der- matological QoL questionnaire and the pain VAS.
References
1. Chren MM, Lasek RJ, Flocke SA, Zyzanski SJ (1997) Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instru- ment for patients with skin diseases. Arch Dermatol 133:1433–1440
2. der Werth JM, Jemec GB (2001) Morbidity in pa- tients with hidradenitis suppurativa. Br J Dermatol 144:809–813
3. der Werth JM, Williams HC (2000) The natural his- tory of hidradenitis suppurativa. J Eur Acad Derma- tol Venereol 14:389–392
4. Finlay AY (1997) Quality of life measurement in der- matology: a practical guide. Br J Dermatol 136:305–
314
5. Grob JJ, Auquier P, Martin S, Lancon C, Bonerandi JJ (1999) Development and validation of a quality of life measurement for chronic skin disorders in French:
VQ-Dermato. The Reseaud Epidemiologie en Der- matologie. Dermatology 199:213–222
6. Jemec GB, Heidenheim M, Nielsen NH (1996) Hi- dradenitis suppurativa – characteristics and conse- quences. Clin Exp Dermatol 21:419–423
7. Sartorius K, Lapins J, Emtestam L, Jemec GB (2003) Suggestions for uniform outcome variables when reporting treatment effects in hidradenitis suppura- tiva. Br J Dermatol 149:211–213
