Deaths of people with intellectual disabilities in the UK
Authors: Philip McCallion, Mary McCarron
Journal: The Lancet (2013)

It is more than 15 years since the intellectual disabilities specialty was mired in controversy when data from California were reported,1Strauss D Kastner T Comparative mortality of people with mental retardation in institutions and the community.Am J Ment Retard. 1996; 101: 26-40PubMed Google Scholar, 2Strauss D Shavelle R What can we learn from the California mortality studies?.Ment Retard. 1998; 36: 406-407Crossref PubMed Scopus (3) Google Scholar which suggested higher rates of mortality among people with intellectual disabilities living in the community compared with those living in institutions. At the time, this finding was regarded as an attack on the movement of people with intellectual disabilities into the community, and there were criticisms of research quality3Conroy J Adler M Commentary on the mortality issue.Ment Retard. 1998; 36: 380-385Crossref PubMed Scopus (14) Google Scholar and efforts to refute the findings.4O'Brien K Zaharia ES Recent mortality patterns in California.Ment Retard. 1988; 36: 372-379Crossref Scopus (17) Google Scholar Over time, the findings stood5Shavelle R Strauss D Day S Deinstitutionalization in California: mortality of persons with developmental disabilities after transfer into community care, 1997–1999.J Data Sci. 2005; 3: 371-380Google Scholar and the methods used in studies to refute them were themselves challenged.6Walsh K Kastner T The Hissom closure in Oklahoma: errors and interpretation. Problems in Conroy et al. (2003).Ment Retard. 2006; 44: 353-369Crossref PubMed Scopus (7) Google Scholar Subsequently, people started asking important questions about the role of community-based primary care and community hospital care in supporting the lives of people with intellectual disabilities living in the community. In The Lancet, Pauline Heslop and colleagues7Heslop P Blair PS Fleming P Hoghton M Marriott A Russ L The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study.Lancet. 2013; (published online Dec 11.)http://dx.doi.org/10.1016/S0140-6736(13)62026-7PubMed Google Scholar report the results of the Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK. Rather than being a criticism of community placements, it draws attention to serious questions remaining long after the California study and, in a different national context, about the quality of health care being offered to people with intellectual disabilities in local communities, this time as compared with the general population. The Confidential Inquiry reviewed all deaths of people with intellectual disabilities who had been registered with a general practitioner in southwest England, and who died between June, 2010, and May, 2012. Deaths were described as avoidable, amenable (ie, could have been avoided in principle by medical knowledge and health care available at the time of death), or premature. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death, and registered at the same general practices as those with intellectual disabilities, were also investigated. Methodology is important; in this report7Heslop P Blair PS Fleming P Hoghton M Marriott A Russ L The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study.Lancet. 2013; (published online Dec 11.)http://dx.doi.org/10.1016/S0140-6736(13)62026-7PubMed Google Scholar the authors note that there was not a comprehensive register of people with intellectual disabilities to draw from. The lines between the general population and people with mild intellectual disabilities were blurred, and the comparator sample was not matched with the group of people with intellectual disabilities on socioeconomic status, as noted by the authors, or on any kind of baseline comorbidity index.8Charlson ME Pompei P Ales KL MacKenzie CR A new method of classifying prognostic comorbidity in longitudinal studies: development and validation.J Chronic Dis. 1987; 40: 373-383Summary Full Text PDF PubMed Scopus (32701) Google Scholar The samples involved were small and comparisons were associational rather than causal. It is of concern that our consideration of issues crucial to the lives of people with intellectual disabilities continues to be limited by methodological issues raised for decades; additional systematic and longitudinal work is needed9McCallion P Swinburne J Burke E McGlinchey E McCarron M Understanding the similarities and differences in aging with an intellectual disability: linking Irish general population and intellectual disability datasets.in: Urbano R Using secondary datasets to understand persons with developmental disabilities and their families (IRRDD-45). Elsevier, New York2013Google Scholar and must be supported by steps to ensure access to high-quality data. 247 individuals with intellectual disabilities died during the study period; their median age was 64 years (IQR 52–75). Male individuals with intellectual disabilities died on average 13 years earlier than the population of England and Wales (median age at death 65 years [IQR 52–75] vs 78 years), and female individuals died on average 20 years earlier (63 years [54–75] vs 83 years). Avoidable deaths from causes amenable to change by good quality health care were more than twice as common in people with intellectual disabilities (37%, 90 of 244) than in the general population of England and Wales (13%). The findings of the Confidential Inquiry are not an aberration; premature death is well established.10Tyrer F McGrother C Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability.J Intellect Disabil Res. 2009; 53: 898-904Crossref PubMed Scopus (76) Google Scholar Other findings were that better quality health care would have reduced this elevated mortality. This latter finding is of particular importance because, rather than simply raising a concern, it offers insight into next steps for exploring what must change if different outcomes are to be achieved in the future. These findings beg the question of why such shortfalls in care are occurring. There are longstanding findings of higher levels of chronic disorders in people with intellectual disability, and in particular increased mental health concerns.11Haveman M Heller T Lee L Maaskant M Shooshtari S Strydom A Major health risks in aging persons with intellectual disabilities: an overview of recent studies.J Policy Pract Intellect Disabil. 2010; 7: 59-69Crossref Scopus (145) Google Scholar Also, data from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing12McCarron M Swinburne J Burke E McGlinchey E Carroll R McCallion P Patterns of multimorbidity in an older population of persons with an intellectual disability: results from the intellectual disability supplement to the Irish longitudinal study on ageing (IDS-TILDA).Res Dev Disabil. 2013; 34: 521-527Crossref PubMed Scopus (113) Google Scholar have shown different patterns in multimorbidity, with eye disease and mental health problems most often associated with a second disorder, and mental health and neurological disease as the most prevalent multimorbidity pairing. In the Confidential Inquiry report7Heslop P Blair PS Fleming P Hoghton M Marriott A Russ L The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study.Lancet. 2013; (published online Dec 11.)http://dx.doi.org/10.1016/S0140-6736(13)62026-7PubMed Google Scholar such differences were further borne out in findings of unaddressed or poorly addressed higher rates of nervous and congenital causes of death among people with intellectual disability. Those involved in community-based health care are probably neither aware of nor considering these health presentation differences for people with intellectual disabilities in the planning and implementation of health-care delivery. The findings of the Confidential Inquiry report not only raise concerns about individual care, but also question and challenge the organisation and responsiveness of health care when people with intellectual disabilities enter clinics, practices, and hospitals. There are educational challenges to be addressed for health-care practitioners. Additionally, providers of services for people with intellectual disabilities must examine how they can be more effective adjuncts and advocates working within community-based health care to minimise negative outcomes. Finally, there is more to be known. Still to be established are effects from lower levels of unhealthy lifestyle choices, higher levels but different patterns of chronic disorders, differential access and differential outcomes from health-care responses, and pre-existing lifelong disabilities and their roles as predictors and mediators of premature death. Such studies will require the ability to track incidence and prevalence of chronic conditions and related deaths. The need to improve the available data remains. We declare that we have no conflicts of interest. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based studyThe Confidential Inquiry provides evidence of the substantial contribution of factors relating to the provision of care and health services to the health disparities between people with and without intellectual disabilities. It is imperative to examine care and service provision for this population as potentially contributory factors to their deaths—factors that can largely be ameliorated. Full-Text PDF Open Access