EB Clinic

1
EB Clinic

• Dr. Elena Pope, MSc, FRCPC
• Assistant Professor
• University of Toronto

2
History

• 35-40 EB patients
• Prior to 2004
• No consistent follow-up in Dermatology
• Scattered visits to other services, not allowing
  coordination of appointments
• No care plan in case of admission

3
Family perspective

• Frustrated with medical system
• Few doctors aware of the diagnosis and its
  complications
• Discrepancy of opinion regarding care when
  admitted

4
MD perspective

• Complicated medical condition
• Unable to provide comprehensive care
• Unable to get colleagues on board for urgent care
  or coordination of appointments
• Frequent cancellations

5
SickKids EB Clinic

• First clinic January 2004
• Monthly last Thursday of the month
• 10 clinics/year
• Goals
• To provide better patient care
• To allow coordination of services
• To allow a dialogue with other services
• To educate residents/fellows

6
SickKids EB Clinic

• Structure of the day
• Morning- coordinated appointments
• Lunch break
• Afternoon- EB Multidisciplinary Clinic

7
SickKids EB Clinic

• EB Multidisciplinary Clinic
• Dermatology
• Wound care specialist
• Plastic Surgery
• Paediatrics
• Dermatology Nurses
• Social worker
• Occupational therapy
• Physiotherapy
• Residents/Fellows

10- 12 people
8
SickKids EB Clinic

• Other collaborators from other services
• Gastroenterology
• Hematology
• Cardiology
• Ophthalmology
• Dentistry
• Pain Team
• ENT

9
What has changed?

• Coordinated appointments same day
• Improved clinical assessment of chronic wounds
  and their management
• Developed a standard form for data collection
• Developed local guidelines
• management of anemia
• cardiac monitoring
• Investigations
• Routine molecular diagnosis in all patients

10
Challenges/goals for the future

• Continue to develop guidelines for care
• Maintain its relevance for each patient
• Develop a transition phase to adult care

11
Challenges/goals for the future

• Help to establish similar clinics in other big
  Canadian centres
• Generate and test more research ideas
• Continue to expand national/international
  collaboration
• Prevent staff burn-out

12
Change has a considerable psychological impact on
the human mind. To the fearful it is
threatening because it means that things may get
worse. To the hopeful it is encouraging
because things may get better. To the
confident it is inspiring because the challenge
exists to make things better. King
Whitney Jr.