Down syndrome health screening – the Fife model

Abstract

Accessible summary• People with Down syndrome have their own health needs which may be different from those of the general population. • We wanted to know if we could pick up these health needs by inviting people to a regular clinic • We found that by coming to the clinic to have their health checked, some people found out about a health need that they might not have known about otherwise. SummaryPeople with Down syndrome have a greater risk of developing a range of health problems, including cardiac problems, thyroid disorders, sensory impairments, reduced muscle tone (hypotonia) and Alzheimer's disease. Despite this increased risk, regular screening is not typically offered to individuals with Down syndrome. A multidisciplinary health screening clinic was set up by a Community Learning Disability Team in Fife to offer regular health screening to people with Down syndrome. The format of the clinic, outcomes after 18 months and future service developments are discussed.

The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence

“…Studies have also identified previously undiagnosed conditions that include serious and life threatening conditions including: heart disease (Walmsley, 2011;Wilson & Haire, 1990); hypertension (Baxter et al, 2006;McConkey, 2013;McConkey et al, 2002;Wilson & Haire, 1990); testicular cancer (Wilson & Haire, 1990); dementia (Baxter et al, 2006;Carlsen & Galluzzi, 1994;Cassidy et al, 2002;Jones et al, 2009); breast cancer (Baxter et al, 2006); diabetes (Baxter et al, 2006;Lennox et al, 2007;Walmsley, 2011); hypothyroidism (Barr et al, 1999;Baxter et al, 2006;Carlsen & Galluzzi, 1994;McConkey, 2013;Ryan & Sunada, 1997); mental health problems (Cassidy et al, 2002;Jones et al, 2009); cataracts (Lennox et al, 2001;McConkey et al, 2002;Ryan & Sunada, 1997); epilepsy (Lennox et al, 2007;Ryan & Sunada, 1997); arthritis ; compound fracture in leg and toxic levels of anticonvulsants (Gunsett et al, 1989); skin cancer (Carlsen & Galluzzi, 1994); and chronic pain, multiple sclerosis, colon cancer, pancreatic cancer, rectovaginal cancer and lung cancer (Ryan & Sunada, 1997).…”

“…The underlying rationale for the use of health checks is that: (1) primary care services tend to be reactive, responding to problems raised by patients (Martin, Roy, Wells, & Lewis, 1997); (2) people with intellectual disabilities may be unaware of the medical implications of symptoms they experience, have difficulty communicating their symptoms, or may be less likely to report them to medical staff (Beange, McElduff, & Baker, 1995;Kerr, McCulloch, & Oliver, 2003;Martin, Philip, Bates, & Warwick, 2004;McKenzie & Powell, 2004;Purcell, Morris, & McConkey, 1999); (3) carers may not always attribute the manifestations of clinical symptoms to physical or mental illness (Wilson & Haire, 1990); (4) as a result, health checks provide a way to detect, treat and prevent new health conditions in this population (Backer & Jervis, 2007;Barr, Gilgunn, Kane, & Moore, 1999;Cassidy, Martin, Martin, & Roy, 2002;Disability Rights Commission, 2006;Jones, Hathaway, Gilhooley, Leech, & MacLeod, 2009;Michael, 2008;Wilson & Haire, 1990). It has also been argued that health checks can help provide baseline information against which changes in health status can be monitored, a particular issue given the frequency of changes in paid carers supporting people with intellectual disabilities and the difficulties that people with intellectual disabilities may have in detecting and reporting longer term changes in health status (Martin, 2003;Jones et al, 2009).…”

“…Overall, the majority of the publications identified were based on studies conducted in the UK, including 19 from England (Backer & Jervis, 2007;Bollard, 1999;Cassidy et al, 2002;Chapman, 2012;Chauhan, Kontopantelis, Campbell, Jarrett, & Lester, 2010;Chauhan et al, 2012;Codling, 2007Codling, , 2012Hunt, Wakefield, & Hunt, 2001;Hunt, Rankine, & Blackmore, 2006;Martin, Axon, & Baillie, 2004;Martin, Philip, et al, 2004;Martin, 2003;Martin, Roy, Wells, & Lewis, 1997;Michell, 2012;Walmsley, 2011;Wells, Turner, Martin, & Roy, 1997;Wilson & Haire, 1990), 5 from Wales (Baxter et al, 2006;Felce et al, 2008aFelce et al, , 2008bJones & Kerr, 1997;Perry et al, 2010) 4 from Scotland (Cooper et al, 2006;Jones et al, 2009;McKenzie & Powell, 2004;Romeo et al, 2009), and 3 from Northern Ireland (Barr et al, 1999;McConkey, 2013;McConkey, Moore, & Marshall, 2002). Additional publications were identified based on studies conducted in the following countries: 8 from Australia (Beange et al, 1995;Gordon, Holden, Ware, Taylor, & Lennox, 2012;Lennox, Green, Diggens, & Ugoni, 2001;Lennox, Rey-Conde, & Cooling, 2006;Lennox et al, 2007Lennox et al, , 2010Lennox et al, , 2013Lennox, Rey-Conde, & Fa...…”

“…Overall, where the proportion of those who had previously undetected health conditions identified was given (Baxter et al, 2006;Cassidy et al, 2002;Jones et al, 2009;Ryan & Sunada, 1997;Wilson & Haire, 1990) proportions ranged from 51% (Baxter et al, 2006) to 94% (Cassidy et al, 2002).…”

“…It has also been argued that health checks can help provide baseline information against which changes in health status can be monitored, a particular issue given the frequency of changes in paid carers supporting people with intellectual disabilities and the difficulties that people with intellectual disabilities may have in detecting and reporting longer term changes in health status (Martin, 2003;Jones et al, 2009).…”