OBJECTIVES: Analyse the burden of chronic hand eczema (CHE) patients with episodes of severe disease preceding the availability of the first approved systemic treatment in 2008.  METHODS: In this cost-of-illness study, 310 patients with CHE refractory to topical steroids in Germany were analyzed (patients with coverage by statutory (GKV) or occupational health insurances (BG)). The cross-sectional survey instrument collected data on patient characteristics, clinical status (i.e. max. severity in past year and at inclusion) and resource use. Only patients with severe disease (photographic guide) in the year preceding this study were selected for this analysis. The following aspects were investigated: resource use, costs, clinical status (at inclusion) and quality of life (DLQI). RESULTS: A total of 161 (52 %) of the CHE patients had severe CHE during the last 12 months (similar fractions in both insurances categories) and 74 % of these patients reported a moderate/severe disease status (Physician global assessment (PGA)) at inclusion. The average DLQI score at inclusion was 8.1 (moderate effect on patient’s life). Approximately half of the patients received only topical treatments, while the remaining patients received a combination of topical therapies with UV-therapy (68 %) and/or systemic therapies (36%). The yearly health care costs of these patients were €2221 (GKV patients) and €3961 (BG). CONCLUSIONS: Among these CHE patients refractory to topical corticosteroids, half of the patients had severe disease during the year prior to the survey. Despite the extensive usage of health care resources (incl. UV-therapy, off-label systemic therapies and hospitalization), the CHE disease severity state did not change considerably for most patients. It remains to be seen whether the availability of the first approved systemic treatment (alitretinoin) for severe CHE will change the dynamics seen in this disease and therefore, further prospective studies are warranted to clarify this aspect.