Thousands of people with Down syndrome, autism and other developmental disabilities are being prescribed anti-psychotic medication by Ontario doctors despite a lack of evidence that the drugs actually help them, a new study has found.

Researchers with the Centre for Addiction and Mental Health and the Institute for Clinical Evaluative Sciences have called for “guidelines and training around antipsychotic prescribing and monitoring” for doctors, pharmacists and care home staff after finding that nearly 40 per cent of people with developmental disabilities were prescribed antipsychotic drugs at some point over a six-year period.

One-third of the patients prescribed antipsychotics had no documented diagnosis of mental illness, according to the study, which tracked more than 51,000 people with developmental disabilities who are eligible for provincial drug benefits.

“We don’t know, with the data, why this one person was prescribed or this (other) person was prescribed so we’re trying to almost guess at why,” said psychologist Yona Lunsky, lead author of the study.

“It could be behaviour, aggression, self-injury, agitation.”

For people with developmental disabilities who live in group homes, the rate of antipsychotic prescriptions was even higher.

About 56 per cent of developmentally disabled group home residents were prescribed antipsychotics. Of those, around 43 per cent had no documented mental health issues.

There is “inconclusive” evidence that antipsychotics are effective in treating the behaviour of developmentally disabled patients who do not have a mental illness, Lunsky said.

While some studies show antipsychotics can be effective in individual cases, over a short period of time, there is no reliable evidence on long-term use of antipsychotics by people with developmental disabilities, Lunsky said. And it is unlikely that all antipsychotic users found in the study need to be taking them, she added.

“There’s no way every single one of those people is on that drug for the right reasons and being very carefully monitored.”

It’s overly simplistic, though, to assume doctors are just prescribing antipsychotics as a “quick fix” for challenging behaviour, Lunsky said.

One of the major factors behind the number of prescriptions could be the fact that medications are often the most affordable and easily accessible method of treatment for families and caregivers struggling to manage the aggression, agitation, self-injury or other challenging behaviours of a person with developmental disabilities.

The majority of adults in the province with intellectual and developmental disabilities are covered by the Ontario Disability Support Program, which offers benefits for prescription medications, Lunsky said.

While a person with developmental disabilities may benefit from seeing a psychologist, psychiatrist, behaviour therapist or other specialized professional, they will either have to spend months on waiting lists or pay out of pocket for faster access.

Certain behaviours of people with developmental disabilities can also be misinterpreted by doctors or caregivers as signs of psychosis, Lunsky said.

“You could think somebody who is talking to themselves all the time is hearing voices (but) it may be just the way that person rehearses or thinks things out, or something that calms them down when they’re anxious,” Lunsky said.

Prescription rates in group homes could be higher because people tend to have a more complex set of issues or be under more stress, Lunsky added.

Even for people with developmental disabilities and mental health issues that are commonly treated with antipsychotics, careful monitoring is vital.

“It’s really important to recognize that there is a place for antipsychotic mediation, (to) help patients in crisis to come back to baseline,” said Roger Oxenham, whose daughter has developmental disabilities and has been diagnosed with personality, anxiety, bipolar and obsessive compulsive disorders.

“But … it really takes a significant amount of consultation to understand what these drugs are about, not just the positive impact of the drug but what the negatives are.”

It can be “hit and miss” trying to find a medication that works for a patient with a dual diagnosis of developmental disabilities and mental health issues, and doctors should speak with family members and caregivers to get a better sense of what drugs might be most effective for a patient, Oxenham said.

Side-effects are a serious concern for anyone who takes powerful antipsychotics, which can, for instance, cause problems with movement and dramatic weight gain and raise the risk of diabetes and hypertension.

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But people with developmental disabilities may be more sensitive to side-effects while, at the same time, less capable of articulating to doctors how they are experiencing them.

Ultimately, more information is required on the reasons why antipsychotics are being prescribed to people with intellectual and developmental disabilities, Lunsky said. And more knowledge on the needs of people with developmental disabilities is required across the board.

“Everybody needs to be educated about this, whether it’s the person who is taking the medication, staff who work in group homes, families and all the people who look after a person with intellectual disabilities,” Lunsky said.

“How can we educate our pharmacists who play a role in this, and for sure our physicians?”