Table 3 Stages of TSC clinic development
Stage of Clinic Development | Services Provided |
|---|---|
Maturity Level 1 | • Care coordinator o Schedule appointments and investigations o First point of contact for advice • Lead Clinician o With TSC interest and expertise o Created referral pathways • Close collaboration with patient/family organizations |
Maturity Level 2 | • Care provided jointly by a core group of TSC-knowledgeable physicians from relevant specialtiesa • MDTs to review cases and agree on management plans • Facilitate advice and care from a broader network of specialties and from a wider geographic area than the clinic can provide • Establish links with other TSC clinics (via MDTs or other joint meetings for peer-to-peer continuing education) • Formalize surveillance for TAND problems, e.g., using the TAND checklist • Use database to facilitate monitoring of patients |
Maturity Level 3 | • Work with larger network of local TSC-knowledgeable specialists; within the same care provider or closely allied care providers • Establish and promote local and regional network of specialists and care providers; acting as expert center providing advice and at least annual holistic review • Provide expertise for review of mental health and coordination of referrals for mental health problems |
Maturity Level 4 (Center of Excellence) | • All the above, plus engage with research into TSC |