Aim: Presenting features associated with orofacial granulomatosis (OFG) and oral Crohn's disease (OCD) are varied, making successful diagnosis and management difficult. The aim of this service evaluation was to establish a profile of patients with these conditions attending a paediatric oral medicine clinic and to determine their overall satisfaction with the care received.
Study design: A retrospective case note analysis to establish the patient profile and a postal patient satisfaction questionnaire for service evaluation.
Methods: All patients with OFG and OCD who had attended the joint paediatric dentistry/oral medicine clinic at Charles Clifford Dental Hospital, Sheffield in the previous 14 years were included in the study. Hospital case notes were retrospectively reviewed and patient demographics, clinical features, investigations, diagnosis, treatment and outcomes of treatment were recorded. An anonymous patient satisfaction questionnaire using the Healthcare Satisfaction Generic Module of the Paediatric Quality of Life Inventory (PedsQLTM) was distributed to all patients by mail.
Results: A total of 24 patients (13 females and 11 males) were identified. Median age at presentation was 11 years (SD± 3.79, range 2-15). Fifteen patients (63%) were diagnosed with OCD, and 9 (37%) with OFG. Overall, the most common orofacial feature was oral ulceration (75%) followed by lip/facial swelling (71%), angular cheilitis (67%) and mucosal cobblestoning (67%). Differences in presentation were seen between the two conditions with oral ulceration (87%) and mucosal cobblestoning (80%) being the most frequently observed features of OCD and lip swelling (78%) and angular cheilitis (67%) being the most common features of OFG. 58% of patients reported relief of symptoms through treatment. Thirteen patient satisfaction questionnaires were completed (54%). 85% (n=11) felt the overall care received in the clinic was 'excellent'.
Conclusions: This service evaluation highlights the variety of presenting features of OFG and OCD. Despite only a moderate response to treatment, patient satisfaction with the service was high, emphasising the importance of good communication when managing children with chronic, debilitating conditions.