down syndrome care hub
This website informs community-based physicians how to provide a medical home for the complex medical needs of people with Down syndrome. It also enables families/caregivers to actively participate in the coordination of medical care of their loved ones. Its contents have been developed according to needs expressed in 2 online surveys directed towards paediatricians and general practitioners in British Columbia as well as towards Canadian parents/caregivers of children and adults with DS. We are grateful to the many students who worked on the development of the contents and the lay out of the website as well as to patient advocates, and health care decision makers who supported our endeavour.
In 2015, we explored access to health care for children and adults with DS, we performed an online parent and caregiver survey. An overwhelming number of 364 parents/caregivers, most of them from Canada, responded. A continuum of care along the lifespan and continuous education of health care providers was considered an utmost need by the majority of respondents. Families also suggested the development of standardized checklists for health surveillance to be used both by health care professionals as well as by caregivers/parents.
In order to best serve Canadian health care providers, and in meeting the caregivers’ mandate, we performed a physician and resident survey in 2016 among 18 physicians and 10 residents. They responded to our questions regarding the development of a web-app or tool that could deliver information on the comprehensive care of people with Down syndrome. Of the physicians, 67% were pediatricians and 24% were general practitioners, with over half of them practicing in city or urban settings. Respondents expressed the need for more information in the following medical topics: the development and changes of medical problems across the lifespan; puberty, adolescence, adulthood & long-term care planning; and behavioral & mental health issues. Downloadable forms for health surveillance, links to guidelines & important literature were considered important resources.
This project was supported by the Down Syndrome Resource Foundation (DSRF, Burnaby, Canada); the Down Syndrome Clinic and Research Center at the Kennedy Krieger Institute (Baltimore, USA); a Teaching Learning & Enhancement Fund (TLEF) granted by the University of British Columbia; TIDE-BC, an Area of Collaboration Fund granted by the BC Children’s Hospital Foundation.
1. Bhattacharyya R, Sanyal D, Roy K, Bhattacharyya S. Correlation between physical anomaly and behavioral abnormalities in Down syndrome. J Pediatr Neurosci. 2010 Jul;5(2):105–10.
2. Irvine B, Luo W, León JA. Congenital anomalies in Canada 2013: a perinatal health surveillance report by the Public Health Agency of Canada’s Canadian Perinatal Surveillance System. Health Promot Chronic Dis Prev Can. 2015 Mar;35(1):21–2.
3. Thomas K, Girdler S, Bourke J, Deshpande A, Bathgate K, Fehr S, et al. Overview of Health Issues in School-aged Children with Down Syndrome. In Elsevier; 2010. p. 67–106. (International Review of Research in Mental Retardation; vol. 39).
4. Pikora TJ, Bourke J, Bathgate K, Foley K-R, Lennox N, Leonard H. Health conditions and their impact among adolescents and young adults with Down syndrome. PLoS One. 2014 May 12;9(5):e96868.
5. Stores RJ, Stores G. The significance of aspects of screening for obstructive sleep apnoea in children with Down syndrome. J Intellect Disabil Res. 2014 Apr;58(4):381–92.
6. Esbensen AJ. Sleep problems and associated comorbidities among adults with Down syndrome. J Intellect Disabil Res. 2016 Jan;60(1):68–79.
7. Hoffmire CA, Magyar CI, Connolly HV, Fernandez ID, van Wijngaarden E. High prevalence of sleep disorders and associated comorbidities in a community sample of children with Down syndrome. J Clin Sleep Med. 2014 Apr 15;10(4):411–9.
8. Glasson EJ, Dye DE, Bittles AH. The triple challenges associated with age-related comorbidities in Down syndrome. J Intellect Disabil Res. 2014 Apr;58(4):393–8.
Project Leads: Dr. Sylvia Stockler & Dr. Osman Ipsiroglu.
Project Partners: Dawn McKenna, Pat Hanbury, Dr. Susan Fawcett, Dr. Linlea Armstrong, John Jacob, Stephanie (Hudson) Stevenson.
Contributors: Nadia Beyzaei, Maria Bleier, Melvin Chan, Katrina Kelly, Heart Cho, Dr. Elizabeth Cooper, Renee Boldut, Kevin Xiao, Scout McWilliams, Simone Race.