Risk factors
Screen for cardiovascular risk factors earlier and more regularly than in the general population and promote prevention.149, 150
Strongly Recommended
Empirical Ecosystem Expert
Cardiovascular disease is prevalent among people with IDD, especially those with Down, 22q11del, and Prader-Willi syndromes.144-146 Risk factors for cardiac disorders are increased owing to physical inactivity, smoking, obesity, and prolonged use of certain psychotropic medications.147, 148
Screen for congestive heart failure (CHF)
Assess annually for signs and symptoms of CHF and cardiac decompensation or when these are detected. If detected, refer the person to a cardiologist or, if the cause is CHD, to an adult congenital heart disease clinic.154-156 Consult the Canadian Congenital Heart Alliance for clinic locations.157
Strongly Recommended
Empirical Ecosystem Expert
The proportion of adults with IDD who have congestive heart failure (CHF) is 3 times higher than in the general population;151 Congenital heart disease (CHD), which is very common in individuals with Down syndrome, can lead to CHF.152, 153
Canadian Congenital Heart Alliance
The Canadian Congenital Heart Alliance is an organization that offers resources and support to individuals living with congenital heart disease.
Health Watch Table: Down syndrome
The Health Watch Table: Down Syndrome, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), complements the primary care guidelines and Preventive Care Checklist and flags issues relevant to the genetic condition Down syndrome.
Health Watch Table: Prader-Willi syndrome
The Health Watch Table: Prader-Willi syndrome, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), complements the primary careguidelines and Preventive Care Checklist and flags issues relevant to the genetic condition Prader-Willi syndrome.
Health Watch Table: 22q11.2 deletion syndrome
The Health Watch Table: 22q11.2 deletion syndrome, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), complements the primary care guidelines and Preventive Care Checklist and addresses issues relevant to the genetic condition 22q11.2 deletion syndrome.
144. Forster-Gibson C, Berg J. Health watch table: Down syndrome. In: Sullivan WF, Health Watch Tables Working Group, editors. Tools for the primary care of people with developmental disabilities. Toronto: Surrey Place & MUMS Guideline Clearinghouse; 2011. p. 43-5.
145. Forster-Gibson C, Berg J. Health watch table: Prader-willi syndrome (PWS). In: Sullivan WF, Health Watch Tables Working Group, editors. Tools for the primary care of people with developmental disabilities. Toronto: Surrey Place & MUMS Guideline Clearinghouse; 2011. p. 50-4.
146. Forster-Gibson C, Berg J. Health watch table: 22q11.2 deletion syndrome. In: Sullivan WF, Health Watch Tables Working Group, editors. Tools for the primary care of people with developmental disabilities. Toronto: Surrey Place & MUMS Guideline Clearinghouse; 2011. p. 58-61.
147. de Winter CF, van den Berge AP, Schoufour JD, Oppewal A, Evenhuis HM. A 3-year follow-up study on cardiovascular disease and mortality in older people with intellectual disabilities. Res Dev Disabil. 2016;53-54:115-26.
148. Morin D, Merineau-Cote J, Ouellette-Kuntz H, Tasse MJ, Kerr M. A comparison of the prevalence of chronic disease among people with and without intellectual disability. Am J Intellect Dev Disabil. 2012;117(6):455-63.
149. Merrick J, Morad M. Chapter 6: Cardiovascular disease. In: O’Hara J, McCarthy JM, Bouras N, editors. Intellectual disability and ill health: a review of the evidence. Cambridge ; New York: Cambridge University Press; 2010. p. 73-7.
150. Therapeutic Guidelines Limited. Preventive health care and health promotion. In: Management guidelines: developmental disability. 3rd ed. Melbourne, Australia: Therapeutic Guidelines Ltd; 2012. p. 117-9.
151. Lunsky,Y, Klein-Geltink,JE, and Yates, EA. Atlas on the primary care of adults in Ontario [Website]. Toronto: Centre for Addiction and Mental Health and Institute for Clinical Evaluative Sciences. 2013. Accessed 2015 Dec 8.
152. Freeman SB, Bean LH, Allen EG, Tinker SW, Locke AE, Druschel C, et al. Ethnicity, sex, and the incidence of congenital heart defects: A report from the national down syndrome project. Gen Med. 2008;10(3):173-80.
153. Colvin KL, Yeager ME. What people with down syndrome can teach us about cardiopulmonary disease. Eur Respir Rev. 2017;26(143):10.1183/16000617.0098,2016.
154. Webb GD, Williams RG. Care of the adult with congenital heart disease: Introduction. J Am Coll Cardiol. 2001;37(5):1166.
155. Silversides CK, Marelli A, Beauchesne L, Dore A, Kiess M, Salehian O, et al. Canadian cardiovascular society 2009 consensus conference on the management of adults with congenital heart disease: Executive summary. Can J Cardiol. 2010;26(3):143-50.
156. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: Executive summary: A report of the American college of Cardiology/American heart association task force on practice guidelines (writing committee to develop guidelines for the management of adults with congenital heart disease). Circulation. 2008;118(23):2395-451.
157. Canadian Congenital Heart Alliance. Find an adult CHD centre near you. [Website].