@article{StoevesandtKeitaGoebeler2022, author = {Stoevesandt, Johanna and Keita, Dyamilatou Ulrike and Goebeler, Matthias}, title = {Disease-related burden and long-term outcome in orofacial granulomatosis: observations from a large single-centre cohort}, series = {Clinical and Experimental Dermatology}, volume = {47}, journal = {Clinical and Experimental Dermatology}, number = {6}, doi = {10.1111/ced.15124}, url = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-318412}, pages = {1169 -- 1173}, year = {2022}, abstract = {There is a lack of standardized treatment recommendations for orofacial granulomatosis, a chronic inflammatory condition aetiologically related to Crohn disease. To assess clinical baseline parameters and treatment strategies, we retrospectively analysed 61 consecutive cases from our institutional database. Disease-related functional/psychological impairment and long-term outcomes were descriptively evaluated using a standardized self-reporting questionnaire. The median age of patients was 45 (7-77) years. Oral steroids were given in 41.0\% of cases, but only produced short-term disease control, while response to steroid-sparing agents was inconsistent. Only a minority of patients reported relevant disease-related functional impairment in eating (21.7\%) or speaking (4.3\%), but the majority perceived psychological distress due to the cosmetic aspects of the disease (69.6\%), comments from others (65.2\%) and/or general anxiety/insecurity (73.9\%). Regardless of the initial treatment, long-term outcomes after 71 months (range 7-304 months) were beneficial, with most patients being in complete remission (52.2\%) or reporting only mild residual swelling (43.5\%).}, language = {en} }