Abstracts

Rationale: Parental pressure for a multidisciplinary clinic that would provide comprehensive, coordinated care to children with tuberous sclerosis complex was the catalyst that led to the establishment of a Tuberous Sclerosis Clinic at Toronto’s Hospital for Sick Children (SickKids) in 2016. The creation of a clinic for a disease that affects multiple systems that require ongoing surveillance and intervention if clinically warranted, presented a unique opportunity to conduct a gap analysis to determine if children referred to the clinic by other health care professionals were receiving appropriate surveillance and care as recommended in the 2012 tuberous sclerosis consensus guidelines.   Methods: A retrospective chart review was conducted to determine if children referred to the Tuberous Sclerosis Clinic at SickKids were receiving appropriate levels of surveillance and care delivery as recommended in the tuberous sclerosis consensus guidelines. Information including geographic area from which referrals came, the type of referring health care professional who initiated and delivered care prior to referral to the Tuberous Sclerosis Clinic, and completeness of systems surveillance were reviewed. Gaps in systems surveillance and care delivery were identified and trended according to the type of referring health care professional, presenting features of the disease, treatment types initiated, referrals made for diagnostic testing and sub-specialty management and comorbidities were evaluated to determine if there were gaps in surveillance and care delivery. Results: In the first year of the clinic, over eighty children were seen and more than five hundred referrals were made for screening investigations and sub-specialty clinics for surveillance and treatment.  Conclusions: The gap analysis conducted supported the need for the establishment of a Tuberous Sclerosis Clinic at Toronto’s Hospital for Sick Children. Ongoing outcomes analysis in the coming years will be conducted to evaluate surveillance and treatment outcomes for those already referred. In addition, a gap analysis of new referrals to determine whether referrals are being made earlier in the disease diagnosis and trajectory after establishment of the TSC Clinic will be analyzed. It is essential to conduct a gap analysis that will be complimented by outcomes research to determine the efficacy of the Tuberous Sclerosis Clinic.  Funding: No sources of funding were received to support this abstract.