By Louise Kinross
British patients with developmental disabilities are up to three times as likely as those without to experience preventable, physical harm while hospitalized, according to a study published this month in Health Affairs.
Researchers looked at the rate of adverse drug reactions; hospital-acquired infections; pressure ulcers; and post-surgery pulmonary embolism, deep vein thrombosis and sepsis in National Health Service patients from April 2017 to March 2019.
“A strong finding of our paper is that patients with developmental disabilities are disproportionately affected by these avoidable harms,” says lead investigator Dr. Rocco Friebel, an assistant professor of health policy at the London School of Economics and Political Science.
Patients with developmental disabilities were also up to 14 per cent more likely to die from preventable physical harm than non-disabled patients.
Dr. Friebel and his team study differences in patient care and safety across high-need groups including the elderly and those receiving palliative care. “We’ve found that some patient groups are much more susceptible to experiencing poor quality of care.”
The new paper is the first to look at inequity in care as it pertains to patients with developmental disabilities across an entire country’s hospital system.
In addition to experiencing preventable harm and death at higher rates, patients with developmental disabilities stay up to more than two weeks longer than patients without, the study found. “That comes with significant costs,” Dr. Friebel says. “On average, one day in hospital in the NHS costs US$500. If patients have to go into the ICU, it’s higher. That really adds up, and is important from an efficiency and cost-implication point of view for decision-makers.”
Dr. Friebel says he was “a little shocked by the magnitude of the problem we found.”
An unexpected finding was that patients with developmental disabilities were, on average, up to 20 years younger than those without. “I think that shows clearly that the system is failing in the community,” Dr. Friebel says. “Those patients shouldn’t be going into the hospital in the first place. Why are we not able to keep them super healthy where they live, giving them access to services and restoring their health? Something is not right within community care. It’s not what the paper is about, but it’s one of the key things to me that came out of it.”
Dr. Friebel says the study shows it is possible to identify different patient groups in electronic health records and track how they do through their hospital stay. “The data exists across most systems, especially in high-income countries, to flag patients in real time and, when things go wrong, to send in quality assurance teams to investigate.”
It wasn’t easy for researchers to identify patients with developmental disabilities because sometimes their disability wasn’t documented during a hospital visit. “We essentially went back 10 to 15 years and if we saw someone had been diagnosed then, but came into hospital in 2017 without their developmental disability being recognized, we managed to flag them up. This data needs to be recorded routinely as a feature of an individual, like ethnicity and gender.”
The Health Affairs study didn’t identify why people with developmental disabilities are at such great risk. “What we speculate in our paper is an underlying systemic discrimination,” Dr. Friebel says. “There’s a lack of awareness and basic training to be in a position to care for this particular group. For the last 10 years, we’ve been chronically underfunded for patients, let alone caring for those patients with additional needs. It’s a disaster zone.”
Dr. Friebel was contacted by a researcher from the Netherlands who is trying to do a similar study there. “He hopes they don’t have the same results. In Dutch hospitals they have specialist physicians who are trained to work with patients with developmental disabilities, and they are with the patient throughout their entire stay. They flag patients with developmental disabilities and they are assigned a specialist. That doesn’t exist here.”
Dr. Friebel hopes his study “creates the ammunition needed for this community to be heard, and to flag to policy makers that there’s a real need to put money here.”
Supporting families and caregivers is also critical. “We say in our paper that we need to involve the caregiver in a much more systematic way. They need to be financially compensated to play this role as a carer, so they have the flexibility to be physically at the hospital with the patient. And we need to have facilities for carers to stay there and sleep there.”
The Health Affairs study identified people with developmental disabilities in four groups: those with intellectual disability; those with chromosome differences like Down syndrome; those with pervasive developmental disorders; and those with congenital malformation syndrome.
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