Metabolic Clinic Atlas: Organization of Care for Children with Inherited Metabolic Disease in Canada

  • Monica F. Lamoureux
  • Kylie Tingley
  • Jonathan B. Kronick
  • Beth K. Potter
  • Alicia K. J. Chan
  • Doug Coyle
  • Linda Dodds
  • Sarah Dyack
  • Annette Feigenbaum
  • Michael Geraghty
  • Jane Gillis
  • Cheryl Rockman-Greenberg
  • Aneal Khan
  • Julian Little
  • Jennifer MacKenzie
  • Bruno Maranda
  • Aizeddin Mhanni
  • John J. Mitchell
  • Grant Mitchell
  • Anne-Marie Laberge
  • Murray Potter
  • Chitra Prasad
  • Komudi Siriwardena
  • Kathy N. Speechley
  • Sylvia Stockler
  • Yannis Trakadis
  • Lesley Turner
  • Clara Van Karnebeek
  • Kumanan Wilson
  • Pranesh Chakraborty
  • on behalf of the Canadian Inherited Metabolic Diseases Research Network
Research Report
Part of the JIMD Reports book series (JIMD, volume 21)

Abstract

Introduction: Nearly all children in Canada with an inherited metabolic disease (IMD) are treated at one of the country’s Hereditary Metabolic Disease Treatment Centres. We sought to understand the system of care for paediatric IMD patients in Canada in order to identify sources of variation and inform future research priorities.

Methods: Treatment centres were contacted by email and invited to complete a web-based survey. The questionnaire addressed, for each centre, the population size served and scope of practice, available human resources and clinic services and research capacity. Survey responses were analyzed descriptively.

Results: We received responses from 13 of the 14 treatment centres invited to participate. These centres represent at least 85% of the Canadian population, with over half of the centres located in southern Ontario and Quebec. All centres reported paediatric patients with IMDs as their main patient population. A variety of dedicated staff was identified; every centre reported having at least one physician and one dietician. The most common ancillary services available included telehealth (11/12 respondents) and biochemical genetic laboratory testing (10/12), with a high variability of access to on-site laboratory tests. A majority of centres indicated access to additional off-site services, but barriers to these were reported. All but one centre indicated previous experience with research.

Conclusions: The variation we identified in the organization of care highlights the need to investigate the association between practice differences and health outcomes for paediatric IMD patients to inform policies that establish equitable access to services that are beneficial.

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Copyright information

© SSIEM and Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Monica F. Lamoureux
    • 1
  • Kylie Tingley
    • 2
  • Jonathan B. Kronick
    • 3
    • 4
  • Beth K. Potter
    • 2
  • Alicia K. J. Chan
    • 5
  • Doug Coyle
    • 2
  • Linda Dodds
    • 6
    • 7
  • Sarah Dyack
    • 6
    • 7
  • Annette Feigenbaum
    • 3
    • 4
  • Michael Geraghty
    • 1
    • 2
  • Jane Gillis
    • 6
    • 7
  • Cheryl Rockman-Greenberg
    • 8
    • 9
  • Aneal Khan
    • 10
    • 11
  • Julian Little
    • 2
  • Jennifer MacKenzie
    • 12
    • 13
  • Bruno Maranda
    • 14
    • 15
  • Aizeddin Mhanni
    • 8
    • 9
  • John J. Mitchell
    • 16
    • 17
  • Grant Mitchell
    • 18
  • Anne-Marie Laberge
    • 18
  • Murray Potter
    • 19
  • Chitra Prasad
    • 20
    • 21
  • Komudi Siriwardena
    • 3
    • 4
  • Kathy N. Speechley
    • 20
  • Sylvia Stockler
    • 22
    • 23
  • Yannis Trakadis
    • 16
    • 17
  • Lesley Turner
    • 24
    • 25
  • Clara Van Karnebeek
    • 22
    • 23
  • Kumanan Wilson
    • 2
  • Pranesh Chakraborty
    • 1
    • 2
  • on behalf of the Canadian Inherited Metabolic Diseases Research Network
  1. 1.Children’s Hospital of Eastern OntarioOttawaCanada
  2. 2.University of OttawaOttawaCanada
  3. 3.Hospital for Sick ChildrenTorontoCanada
  4. 4.University of TorontoTorontoCanada
  5. 5.University of AlbertaEdmontonCanada
  6. 6.Dalhousie UniversityHalifaxCanada
  7. 7.IWK Health CentreHalifaxCanada
  8. 8.University of ManitobaWinnipegCanada
  9. 9.HSC WinnipegWinnipegCanada
  10. 10.University of CalgaryCalgaryCanada
  11. 11.Alberta Children’s HospitalOttawaCanada
  12. 12.Queen’s UniversityKingstonCanada
  13. 13.Kingston General HospitalKingstonCanada
  14. 14.University of SherbrookeSherbrookeCanada
  15. 15.CHU SherbrookeSherbrookeCanada
  16. 16.McGill UniversityMontrealCanada
  17. 17.Montreal Children’s HospitalMontrealCanada
  18. 18.CHU Ste-JustineMontrealCanada
  19. 19.McMaster UniversityHamiltonCanada
  20. 20.Western UniversityLondonCanada
  21. 21.LHSC LondonLondonCanada
  22. 22.University of British ColumbiaVancouverCanada
  23. 23.BC Children’s HospitalVancouverCanada
  24. 24.Memorial UniversitySt John’sCanada
  25. 25.Janeway Children’s Health CentreSt John’sCanada

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