EB ClinicEB Clinic
Dr. Elena Pope, MSc, FRCPCDr. Elena Pope, MSc, FRCPC
Assistant ProfessorAssistant Professor
University ...
HistoryHistory
~ 35-40 EB patients~ 35-40 EB patients
 Prior to 2004Prior to 2004
No consistent follow-up in Dermatolog...
Family perspectiveFamily perspective
 Frustrated with medical systemFrustrated with medical system
 Few doctors aware of...
MD perspectiveMD perspective
Complicated medical conditionComplicated medical condition
Unable to provide comprehensive ...
SickKids EB ClinicSickKids EB Clinic
 First clinic: January 2004First clinic: January 2004
 Monthly: last Thursday of th...
SickKids EB ClinicSickKids EB Clinic
Structure of the dayStructure of the day
Morning- coordinated appointmentsMorning- ...
SickKids EB ClinicSickKids EB Clinic
 EB Multidisciplinary ClinicEB Multidisciplinary Clinic
DermatologyDermatology
Wou...
SickKids EB ClinicSickKids EB Clinic
Other collaborators from other servicesOther collaborators from other services
Gast...
What has changed?What has changed?
 Coordinated appointments same dayCoordinated appointments same day
 Improved clinica...
Challenges/goals for the futureChallenges/goals for the future
Continue to develop guidelines forContinue to develop guid...
Challenges/goals for the futureChallenges/goals for the future
Help to establish similar clinics inHelp to establish simi...
ChangeChange has a considerable psychologicalhas a considerable psychological
impact on the human mind.impact on the human...
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SickKids EB Clinic

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SickKids EB Clinic

  1. 1. EB ClinicEB Clinic Dr. Elena Pope, MSc, FRCPCDr. Elena Pope, MSc, FRCPC Assistant ProfessorAssistant Professor University of TorontoUniversity of Toronto
  2. 2. HistoryHistory ~ 35-40 EB patients~ 35-40 EB patients  Prior to 2004Prior to 2004 No consistent follow-up in DermatologyNo consistent follow-up in Dermatology Scattered visits to other services, notScattered visits to other services, not allowing coordination of appointmentsallowing coordination of appointments No care plan in case of admissionNo care plan in case of admission
  3. 3. Family perspectiveFamily perspective  Frustrated with medical systemFrustrated with medical system  Few doctors aware of the diagnosis andFew doctors aware of the diagnosis and its complicationsits complications  Discrepancy of opinion regarding careDiscrepancy of opinion regarding care when admittedwhen admitted
  4. 4. MD perspectiveMD perspective Complicated medical conditionComplicated medical condition Unable to provide comprehensive careUnable to provide comprehensive care Unable to get colleagues on board forUnable to get colleagues on board for urgent care or coordination ofurgent care or coordination of appointmentsappointments Frequent cancellationsFrequent cancellations
  5. 5. SickKids EB ClinicSickKids EB Clinic  First clinic: January 2004First clinic: January 2004  Monthly: last Thursday of the monthMonthly: last Thursday of the month  ~10 clinics/year~10 clinics/year  Goals:Goals: To provide better patient careTo provide better patient care To allow coordination of servicesTo allow coordination of services To allow a dialogue with other servicesTo allow a dialogue with other services To educate residents/fellowsTo educate residents/fellows
  6. 6. SickKids EB ClinicSickKids EB Clinic Structure of the dayStructure of the day Morning- coordinated appointmentsMorning- coordinated appointments Lunch breakLunch break Afternoon- EB Multidisciplinary ClinicAfternoon- EB Multidisciplinary Clinic
  7. 7. SickKids EB ClinicSickKids EB Clinic  EB Multidisciplinary ClinicEB Multidisciplinary Clinic DermatologyDermatology Wound care specialistWound care specialist Plastic SurgeryPlastic Surgery PaediatricsPaediatrics Dermatology NursesDermatology Nurses Social workerSocial worker Occupational therapyOccupational therapy PhysiotherapyPhysiotherapy Residents/FellowsResidents/Fellows 10- 12 people
  8. 8. SickKids EB ClinicSickKids EB Clinic Other collaborators from other servicesOther collaborators from other services GastroenterologyGastroenterology HematologyHematology CardiologyCardiology OphthalmologyOphthalmology DentistryDentistry Pain TeamPain Team ENTENT
  9. 9. What has changed?What has changed?  Coordinated appointments same dayCoordinated appointments same day  Improved clinical assessment of chronicImproved clinical assessment of chronic wounds and their managementwounds and their management  Developed a standard form for dataDeveloped a standard form for data collectioncollection  Developed local guidelinesDeveloped local guidelines management of anemiamanagement of anemia cardiac monitoringcardiac monitoring InvestigationsInvestigations  Routine molecular diagnosis in all patientsRoutine molecular diagnosis in all patients
  10. 10. Challenges/goals for the futureChallenges/goals for the future Continue to develop guidelines forContinue to develop guidelines for carecare Maintain its relevance for each patientMaintain its relevance for each patient Develop a transition phase to adultDevelop a transition phase to adult carecare
  11. 11. Challenges/goals for the futureChallenges/goals for the future Help to establish similar clinics inHelp to establish similar clinics in other big Canadian centresother big Canadian centres Generate and test more researchGenerate and test more research ideasideas Continue to expandContinue to expand national/international collaborationnational/international collaboration Prevent staff burn-outPrevent staff burn-out
  12. 12. ChangeChange has a considerable psychologicalhas a considerable psychological impact on the human mind.impact on the human mind. To theTo the fearfulfearful it is threatening becauseit is threatening because it means that things may get worse.it means that things may get worse. To theTo the hopefulhopeful it is encouragingit is encouraging because things may get better.because things may get better. To theTo the confidentconfident it is inspiring becauseit is inspiring because the challenge exists to make things better.the challenge exists to make things better. King Whitney Jr.King Whitney Jr.
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