G400(P) an Integrated ‘One-Stop’ Multi-Disciplinary (mdt) Clinic for Children and Young People with Tuberous Sclerosis Complex (Tsc)

TSC is a complex, genetic disorder characterised by growth of benign tumours in various organs leading to epilepsy, renal, cardiac, skin, lung, liver and eye manifestations. Thus, patients affected attend multiple clinic appointments with different specialists. Developmental delay and TSC-associated neuropsychiatric disorders (TANDS) are common but often not addressed. Aims To improve the care of children and young people affected by TSC by an integrated multidisciplinary team (MDT) ‘one–stop’ clinic. To provide psychological assessment of TANDS. Method The MDT TSC clinic was launched in April 2016 by coordinating neurology, nephrology, oncology, psychology consultants with the Rhoald Dhal Rare Disease (RD) Specialist nurses and Tuberous Sclerosis Advisor (TSA) on same visit. Psychology input was funded by a Pharma Joint Working Agreement. The RD nurse provides Information Packs and calls families to discuss what their main concerns are, thereby enabling clinicians to address what is relevant to patients. Results The TSC MDT clinic has: Improved coordination of specialists and investigations. Feedback from Patient Questionnaires: ‘this should have been started a long time ago’, ‘this is a fabulous idea, saves us time’, ‘having all the specialists together makes so much sense -they can explain in a way that we can understand’. 55% of families were not aware of the TSA 98 patients identified with TSC by joining lists kept by each specialty. Average patient age 10.3 years. (range: 1.6–21.1 years.). 38% had previous renal input; 42% had not had a renal ultrasound. 66% had neurology input but 33% had no brain imaging. The Appointment Burden before TSC clinic was reviewed: showed average appointment number/patient was 5.3/year (range 0.6–11.7/yr.). 40% of Patients in TSC clinic required further psychology input 20% referred for formal CAMHS review. Patients above age of 16 years. reviewed by the adult TSC transition nurses from adult sister hospital. Conclusion The MDT TSC clinic has improved coordinated patient care including ensuring imaging is regularly carried out. It has identified high burden of psychological need. Overall, this ‘one-stop’ clinic system has improved the care the patients and families with TSC.