Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources.

OBJECTIVE: To improve our understanding of cancer in adults with intellectual disabilities. DESIGN: Population-based study using linked data about deceased adults from the Learning (Intellectual) Disabilities Mortality Review (LeDeR) programme, the national cancer registry and NHS Digital. SETTING: England. PARTICIPANTS: 1096 adults with intellectual disabilities identified by the LeDeR programme who died between 1 January 2017 and 31 December 2019. OUTCOME MEASURE: Any form of cancer listed as a long-term health condition by a LeDeR reviewer or 10th edition of the International Classification of Diseases codes C00-D49 included on Parts I or II of the Medical Certificate of Cause of Death. RESULTS: In decedents with intellectual disabilities and cancer, more than a third (35%; n=162) had cancer diagnosed via emergency presentations. Almost half (45%; n=228) of cancers were at stage IV when diagnosed. More than a third (36%; n=309) of underlying causes of deaths were of cancers of the digestive system; almost half of these (48%; n=147) were cancer of the colon, rectum or anus. Of those who died with colorectal cancer, 43% were below the age threshold for colorectal screening. CONCLUSIONS: In decedents with intellectual disabilities, symptoms suggestive of cancer had tended to be identified most frequently as an emergency and at a late stage. There is a need for greater awareness of symptoms of cancer in this population, a lower threshold for referral by General Practitioners (GPs), accelerated access to diagnosis and treatment and consideration paid to lowering the age for colorectal screening.

Establishing a national mortality review programme for people with intellectual disabilities: The experience in England.

In England, the national mortality review programme for people with intellectual disabilities, the LeDeR programme, was established in 2015. The programme supports local areas to review the deaths of all people with intellectual disabilities aged 4 years and over. Each death has an initial review; if indicated, a full multi-agency review takes place. The learning from the mortality reviews contributes to service improvements locally and nationally. This paper describes the programme's introduction and processes, exploring the challenges faced, and the successes achieved. It considers the background and rationale for the programme and the steps taken during its implementation, in order that others can learn from our experiences. Now the programme is established, its focus needs to shift so that we have a better understanding about how the findings of mortality reviews are leading to local and national service improvements and their impact.

Deaths of people with intellectual disabilities: Analysis of deaths in England from COVID-19 and other causes.

BACKGROUND: People with intellectual disabilities experience significant health inequities. The aim of this report is to understand the circumstances leading to death from COVID-19 in people with intellectual disabilities. METHOD: Local areas in England prioritised reviewing 200 deaths of adults with intellectual disabilities. Of these, approximately 80% were required to be deaths from suspected or confirmed COVID-19 as this was the focus of the study; the remainder from other causes. All deaths occurred between 2 March2020 and 9 June 2020. RESULTS: People with intellectual disabilities differed from the general population in their symptoms of COVID-19 and age at death. The overall quality of care was rated similar to other deaths of people with intellectual disabilities. Concerns were raised relating to recognising acute deterioration and do not attempt cardio-pulmonary resuscitation decisions. CONCLUSIONS: Service improvements are indicated in the ways in which people with intellectual disabilities encounter COVID-19 and experience the disease.