Review articleThe impact of health checks for people with intellectual disabilities: An updated systematic review of evidence
Introduction
People with intellectual disabilities1 have poorer health than their non-disabled peers, differences in health status that are, to a significant extent, avoidable (Emerson and Hatton, 2014, Krahn et al., 2006, NHS Health Scotland, 2004, O’Hara et al., 2010, Ouellette-Kuntz, 2005, US Department Health and Human Services, 2002, Van Schrojenstein Lantman-de Valk, 2005). These health inequalities start early in life and result from the interaction between multiple processes. Firstly, people with intellectual disabilities are at increased risk of exposure to well established ‘social determinants’ of health such as poverty, poor housing conditions, unemployment, social disconnectedness and overt discrimination (Beresford and Rhodes, 2008, Emerson, 2010, Emerson and Hatton, 2010, Emerson et al., 2012). There is also increased risk associated with specific genetic and biological causes of intellectual disabilities (e.g., congenital heart disease in people with Down's syndrome and Williams syndrome; hypothalamic disorders in people with Prader–Willi syndrome; mental health problems among people with autism spectrum disorders and a number of specific syndromes) (Batshaw et al., 2007, Dykens et al., 2000, Emerson and Einfeld, 2011, Harris, 2005). In addition, communication difficulties and reduced health ‘literacy’ can reduce the capacity of people with intellectual disabilities to convey health needs to others (e.g., relatives, friends, paid support workers) (McKenzie & Powell, 2004). People with intellectual disabilities may also be less likely to receive or act upon health promotion information. Finally, there may be deficiencies in access to and the quality of healthcare provision for people with intellectual disabilities (Alborz et al., 2005, Disability Rights Commission, 2006, Giraud-Saunders, 2009, Mencap, 2007, Michael, 2008). For example, a recent investigation of the causes and circumstances of 244 deaths of people with intellectual disabilities in England found that 28% were ‘amenable’ in that in light of current knowledge all or most deaths from that cause could have been avoided through the provision of good quality healthcare (Heslop et al., 2013a).
Health checks vary in how they are delivered and the following definition has been suggested (Lennox & Robertson, 2014): “… the systematic gathering of a comprehensive health history that includes the person's current and past health information, and their psycho-social context. This history is reviewed by a primary care health professional, considered and clarified where necessary, and leads to a directed, systematic physical and mental health examination which results in identification of any unmet health needs that are documented and optimally acted upon. The process optimally includes specific information about commonly missed and syndrome-specific health conditions to inform the person with intellectual disability, their caregivers and the health professional” (p195).
The implementation of health checks has been recommended internationally as one component of health policy responses to the poorer health of people with intellectual disabilities. Within both the United Kingdom (UK) and Australia, there have been policy initiatives to promote health checks for people with intellectual disabilities. In 2007, the Australian government introduced a new Medicare rebate for people with an intellectual disability who have an annual health check, at an estimated cost of $11 million over four years (Pyne, 2007). The Comprehensive Health Assessment Program (CHAP) has been licensed and used widely across Australia to deliver these health assessments in what is described as unusually rapid translation of evidence into practice (Lennox et al., 2010).
In the UK, the Disability Rights Commission in 2006 recommended the introduction of annual health checks for people with intellectual disabilities in England and Wales as a ‘reasonable adjustment’ in primary health care services (Disability Rights Commission, 2006). ‘Reasonable adjustments’ refers to the legal duty of public sector services to make their services as accessible and effective as they would be for people without disabilities (Hatton, Roberts, & Baines, 2011). Annual health checks for every adult on a local authority register were introduced as a Directed Enhanced Service (DES) in primary care services in Wales in 2006, after which there was a year on year improvement in uptake, with the proportions of people with intellectual disabilities who received a health check in 2006/2007, 2007/2008 and 2008/2009 being 31%, 34%, and 41% (Perry, Kerr, Felce, Bartley, & Tomlinson, 2010). In England, a DES to deliver annual health checks for people with intellectual disabilities began in 2008/9 and has been extended to 2014/2015. In 2012/2013, 92,329 people with intellectual disabilities in England received a health check, 52% of those eligible to receive one (Glover & Niggebrugge, 2013). In Scotland, one of the recommendations of the Government is that the Learning Disability Strategy Implementation Group will work with the newly created Scottish Learning Disability Observatory to establish and implement a targeted health screening programme (health checks) for people with intellectual disabilities across NHS Scotland (Scottish Government, 2013).
In Canada, periodic health examinations were recommended in guidelines for the primary care of adults with developmental disabilities (Lunsky, Balogh, Sullivan, & Jaakkimainen, 2014). However, based on data from over 66,000 adults with developmental disabilities, the periodic health examination occurred for only 22% of adults with developmental disabilities over a two-year period, slightly less than the 26% for adults without developmental disabilities (Lunsky, Klein-Geltink, & Yates, 2013). In New Zealand, it was recommended that primary health care providers should have health assessment tools for people with intellectual disabilities as part of recommendations to urgently address systemic neglect of the health of adults with intellectual disabilities (National Advisory Committee on Health and Disability, 2003).
At present, a number of health assessment tools are being used in New Zealand, including the CHAP which is being used by one support provider to check the health of people accessing its residential services (Ministry of Health, 2013). Initial review of the implementation of the CHAP by the provider indicates that conditions are being identified and being treated, that are life enhancing and potentially lifesaving (Garriock, 2013, Personal Communication).
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 et al., 1995, Kerr et al., 2003, Martin et al., 2004b, McKenzie and Powell, 2004, Purcell et al., 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 and Jervis, 2007, Barr et al., 1999, Cassidy et al., 2002, Disability Rights Commission, 2006, Jones et al., 2009, Michael, 2008, Wilson and 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).
It has also been argued that health checks may be cost effective as the detection of new or underlying medical conditions may reduce the consumption of resources in other areas of healthcare (Ryan & Sunada, 1997), such as services for challenging behaviour and mental health problems (Gunsett et al., 1989, Ryan and Sunada, 1997) and reduce the need for future and potentially more expensive treatment.
Whilst a review of evidence on the effectiveness of health checks for people with intellectual disabilities has been published previously (Robertson et al., 2010, Robertson et al., 2011), much of the research included in the review was published prior to the implementation of the policy responses outlined above. In view of this, and the continuing international interest in health checks, an update of this review is timely. This paper updates the results of the previous systematic review of published research concerning the impact of health checks on the health and well-being of people with intellectual disabilities.
Section snippets
Search strategy
Searches of electronic literature databases (Medline, Cinahl, Web of Science and PsycINFO) were initially conducted in June 2010 to identify relevant peer reviewed articles published from 1989 onwards in the English language. Searches were conducted again in August 2013 to identify literature published since June 2010. In each database, terms for intellectual disabilities were combined with search terms relating to health checks (e.g. health screening; health monitoring). In addition, a request
Number of studies identified
A total of 45 peer reviewed academic journal publications and three reports were identified for inclusion in this review. In 2010, 38 publications were included in the review, one of which was a report (Perry et al., 2010). Some of the results of this report have subsequently been pooled with data from another study (Heslop et al., 2013b) in a peer reviewed journal article (Perry et al., 2014). Two additional reports were included in this update: a report on an evaluation of the DES in England (
Discussion of the evidence for health checks
Overall, the main findings of this updated review are similar to those of the previous review, with newly identified studies largely supporting previous conclusions. Most of the studies in the previous review were conducted prior to incentivisation of health checks via the DES scheme, and the newly identified studies extend the findings of previous studies on non-routine practice to studies of more routine practice in relation to the DES. Evidence consistently suggests that health checks are
Acknowledgements
The research was undertaken as part of the intellectual disabilities workstream of Public Health England. However, the views expressed are those of the authors and should not be taken to necessarily represent the views of Public Health England.
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