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Background  Toxic mercury is still being used today for example by workers mining gold, resulting in diverse health symptoms in users and individuals in proximity. A considerable burden of disease (BoD) can be assumed, while previous analyses were limited by data scarcity. Besides limited epidemiological data, neither data about the health-related quality of life (HRQoL) nor about the disease severity (disability weight, DW) is available. The aim of the project was to develop disease profiles of chronic metallic mercury vapor intoxication (CMMVI) by including the HRQoL to improve the data basis for BoD analyses of gold miners exposed to mercury.    Methods  Disease profiles comprising the disease label [a], differentiation into disease stages [b], description of the cause of exposure [c], a list of common symptoms [d], and an assessment of the HRQoL [e] were developed using expert elicitation and literature search. The HRQoL was assessed by experts using the five EuroQol dimensions accompanied by the cognition add-on questionnaire (EQ-5D + C).    Results  The ten sources used for the analyses (interview transcript, presentation, and eight literature reviews) identified more than 250 terms describing 85 distinguishable health effects of CMMVI. The analysis revealed 29 common symptoms that were frequently mentioned. Moderate and severe CMMVI cases differ regarding their symptoms and/or symptom severity and HRQoL, resulting in the EQ-5D + C-3L codes 121222 and 2, respectively.    Conclusions  The profiles should be used to facilitate the ascertainment of CMMVI cases, to compare the HRQoL with other diseases, to derive DWs for improving BoD estimates, and to foster discussions about how to reduce the associated burden.    Electronic supplementary material  The online version of this article (doi:10.1186/s12955-015-0388-0) contains supplementary material, which is available to authorized users.

Disease profile and health-related quality of life (HRQoL) using the EuroQol (EQ-5D + C) questionnaire for chronic metallic mercury vapor intoxication