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 disease 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, discharge, 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 specifically because of HS. This suggests an overall higher morbidity, as other days lost to other causes were not included in the data. The duration of 2.7 days however ranked below the average number of work days lost for all reasons per employed person (7.5 days) and even further below 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 elicited and there is, therefore, no mitigation of suffering: the stigma attached to HS is because it affects predominantly intimate body parts. It has connotations of socially unacceptable behavior or a lack of hygiene and is often concealed even from close relatives.

In France, in the context of a TNS Sofres survey (unpublished data), which is deemed to provide a representative sample of patients with HS, 47.2% of patients reported a medical consultation for their disease in the year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 distress.

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