An anonymous, 80 question REDCap survey for parents/caregivers of individuals with Down syndrome was conducted online in 2015. The survey consisted of 5 parts: (i) basic demographics, (ii) diagnoses, medications and supplements, (iii) development, (iv) sleep/wake-behaviours, and (v) feedback and testimonials. 349 Canadian responses were received; responses were separated into age groups and urban/rural regions. General practitioners and paediatricians were identified as the primary physician for 97% of individuals with DS. The most frequent comorbidities included ophthalmic, ENT & respiratory, cardiovascular, and dermatological conditions; mental health conditions were also prevalent in individuals 13 years and older, and sleep disorders across all ages.

Individuals with DS have multiple comorbidities that require specialized care. Specifically, a discrepancy between the symptoms described by parent/caregivers and medical diagnoses was identified; this finding suggests that there may be a communication gap between parents/caregivers and healthcare professionals in the Canadian medical system. As the majority of individuals with Down syndrome identified general practitioners and paediatricians as their primary caregiver, this suggests that these physicians are integral in targeting these identified gaps.

Achievements: (1) Frames the multitude of challenges in the orchestration of the chronic care needs in children with Down syndrome. (2) Results focus on the situation in British Columbia and allow comparisons with Alberta and Ontario.

Project Leads: Sylvia Stockler, Linlea Armstrong & Osman Ipsiroglu (all BCCH, UBC)

Co-Leads: Dawn McKenna & Pat Hanbury (Down Syndrome Research Foundation, Burnaby, BC)

Project Partners: Dr. George T. Capone, Director, Down Syndrome Clinic, Kennedy Krieger Institute, Johns Hopkins University, Baltimore, USA

Research Assistants: Nadia Beyzaei (lead), Emmanuel Tse, Melvin Chan, Arshdeep Marwaha

Funding: (1) Treatable Intellectual Disability Endeavour/BC Children’s Hospital Foundation; (2) Funding Award for Down syndrome virtual clinic (PI: Sylvia Stockler); (2) BC Children's Hospital Foundation/Children Sleep Network (PI: Osman S. Ipsiroglu); (3) DSRF & Telus: Down Syndrome App Project (DoSApp) (awarded to DSRF; PIs: Dawn McKenna and Pat Hanbury); (4) NeuroDevNet – Network of Centres of Excellence (NCE): Sleep Apps: Better Nights, Better Days, Less Medication (PI: Osman S. Ipsiroglu)

Acknowledgements: Ms. Karen Derry (Sunny Hill Health Centre for Children, BC Children’s Hospital); Ms. Susan Fawcett (Down Syndrome Research Foundation); Nina di Pietro (Douglas College, New Westminster, BC)