Percent of Population Aged 16 and Older Reporting Limitations in General Activities: 27.3%

Source: Statistics on Persons with Disabilities, Master tables concerning EU 2020: year 2018, Prepared for the European Disability Expertise (EDE) By Stefanos Grammenos (in collaboration with Mark Priestley), Sept. 11, 2020.

“Even though adult patients with developmental disability are considered a high-need patient group, few studies have investigated patient safety incidents specifically in this population.^17–20 Existing research reported that patients with developmental disability received lower-quality hospital care processes²¹—for example, during chemotherapy and certain surgical interventions—and experienced worse outcomes, including iatrogenic harm in 36.7 percent of pediatric patients with intellectual disabilities and high levels of preventable hospital readmission rates.²² Similarly, a chart review in the United States published in 2002 found that approximately one in three patients with a developmental disability received medication (often psychotropic drugs) that was not based on any prior diagnosis.²³ Despite the salience of this issue to patients, policy makers, caregivers, and advocates, there have been few attempts to systematically assess the experiences and outcomes of people with developmental disability.²¹

“One example of such an attempt is the 2021 Learning from Lives and Deaths (LeDeR) program in England²⁴ (formerly the Learning from Deaths Review Programme, established in 2015), which was set up to assess the circumstances surrounding the death of people with “learning disabilities” (intellectual disability) and to derive lessons for future quality improvement.²⁵ This program evolved in response to awareness about the avoidable in-hospital deaths of six patients with developmental disability that were linked to poor clinical care.²⁶ Reviews conducted as part of LeDeR reported that as of 2018, approximately 13 percent of all deaths were caused by poor quality of hospital care, including negligence and abuse,²⁷ ultimately guiding the UK government objective to shift for patients with learning disability and autism from the in-hospital setting into the community.²⁸ However, more than half of these reviews have been a result of notification by family members, instead of being flagged by health care providers or allied health professionals.²⁴ A data-driven approach to systematically monitoring outcomes for patients with developmental disability could therefore enhance the identification of hospital failures, although the efficacy of routinely collected patient-level hospital data for such purposes in patients with developmental disability remains unknown.”

Source: Rocco Friebel and Laia Maynou. Assessing The Dangers Of A Hospital Stay For Patients With Developmental Disability In England, 2017–19. Health Affairs 2022 41:10, 1486-1495

“Whilst it is assumed that health services are intended to support the most vulnerable patient groups, this study illustrates that access to services is complex and may not always be compatible with this aim. In the first dimension of Levesque’s framework, patients’ ability to perceive care was constrained by their levels of health literacy and beliefs related to health and illness. Even when an MUR [Medicines Use Review] was undertaken, they were unable to fully benefit because they were unaccustomed, and therefore unprepared, to receiving such a service. In effect, patients had low ability to frame MURs as a service that they could access for support and could personally benefit from. This is unsurprising given our previous work suggesting there is a general plurality and fragility of patients’ sense-making of new pharmacists’ roles and services [38]. Similar problems of low ability to perceive have been seen in other services such as smoking cessation. Whereas interventions combining pharmacotherapy and behavioral support have been shown to increase successful attempts to quit smoking [39], it is acknowledged that people from marginalized groups (who have high prevalence of smoking compared with the general population) have lower levels of risk perceptions, poorer awareness and uptake of cessation support and poorer experiences (i.e., feel judged) [40,41,42].

“In the second dimension, it was found that patients’ capacity to choose to seek care was constrained by their knowledge of the MUR service, but also wider perceptions and experiences of healthcare and interactions with health professionals. Our findings support evidence suggesting that patients’ experience of healthcare is poor and subject to implicit bias [7,8,9,10]. The third dimension illustrated the problems patients encountered accessing care largely due their circumstance. Patients were particularly disadvantaged where they were physically unable to reach the pharmacy and so had fewer opportunities to speak to the pharmacist. In the final dimension, ‘ability to engage’, the impact of receiving a single MUR on the patient’s care and wellbeing was difficult to assess. Nevertheless, where the pharmacist’s advice and support were in line with patient expectations, this was valued by patients and reportedly made a positive contribution to their care.”

“The repercussions on the provision of pharmacy service, management and delivery are unclear. Pharmacists are increasingly taking on enhanced medicine management and support roles to improve knowledge, understanding and adherence to medicines [16]. One example is of the UK National Health Service (NHS) community pharmacy funded medication review service known as ‘Medicines Use Reviews’ (MURs). Available since 2005, the service consists of an annual consultation with the pharmacist. The purpose being to resolve medicine related issues, concerns and to reduce avoidable waste [17]. Despite this service seeking to improve knowledge and use of medicines, significant variability in delivery has raised concerns, particularly that the service is not being targeted to patients who may benefit most from a review with a pharmacist [18]. There are low levels of evidence to support medication reviews for marginalized groups. However, this should not be interpreted as a lack of need, but rather a result of a general low level of representation of marginalized groups in research [19].”

Health Systems Facts is a project of the Real Reporting Foundation. We provide reliable statistics and other data from authoritative sources regarding health systems in the US and sixteen other nations.

Page last updated Nov. 4, 2022 by Doug McVay, Editor.