Increase in online ADHD diagnoses for kids poses ethical questions

In 2020, in the midst of a pandemic, clinical protocols were altered for Ontario health clinics, allowing them to perform more types of care virtually. This included ADHD assessments and ADHD prescriptions for children – services that previously had been restricted to in-person appointments. But while other restrictions on virtual care are back, clinics are still allowed to virtually assess children for ADHD.

This shift has allowed for more and quicker diagnoses – though not covered by provincial insurance (OHIP) – via a host of newly emerging private, for-profit clinics. However, it also has      raised significant ethical questions.

It solves an equity issue in terms of rural access to timely assessments, but does it also create new equity issues as a privatized service?

Is it even feasible to diagnose a child for a condition like ADHD without meeting that child in person?

And as rates of ADHD diagnosis continue to rise, should health regulators re-examine the virtual care approach?

Ontario: More prescriptions, less regulation

There are numerous for-profit clinics offering virtual diagnoses and prescriptions for childhood ADHD in Ontario. These include KixCare, which does not offer the option of an in-person assessment. Another clinic, Springboard, makes virtual appointments available within days, charging around $2,600 for assessments, which take three to four  hours. The clinic offers coaching and therapy at an additional cost, also not covered by OHIP. Families can choose to continue to visit the clinic virtually during a trial stage with medications, prescribed by a doctor      in the clinic who then sends prescribing information back to the child’s primary care provider.

For-profit clinics like these are departing from Canada’s traditional single-payer health care model. By charging patients out-of-pocket fees for services, the clinics are able to generate more revenue because they are working outside of the billing standards for OHIP, standards that set limits on the maximum amount doctors can earn for providing specific services. Instead many services are provided by non-physician providers, who are not limited by OHIP in the same way.

Need for safeguards

ADHD prescriptions rose during the pandemic in Ontario, with women, people of higher income and those aged 20 to 24 receiving the most new diagnoses, according to research published in January 2024 by a team including researchers from the Centre for Addictions and Mental Health and Holland Bloorview Children’s Hospital. There may be numerous reasons for this increase but could the move to virtual care have been a factor?

Ontario psychiatrist Javeed Sukhera, who treats both children and adults in Canada and the U.S., says virtual assessments can work for youth with ADHD, who may receive treatment quicker if they live in remote areas. However, he is concerned that as health care becomes more privatized, it will lead to exploitation and over-diagnosis of certain conditions.

“There have been a lot of profiteers who have tried to capitalize on people’s needs and I think this is very dangerous,” he said. “In some settings, profiteering companies have set up systems to offer ADHD assessments that are almost always substandard. This is different from not-for-profit setups that adhere to quality standards and regulatory mechanisms.”

Sukhera’s concerns recall the case of Cerebral Inc., a New York state-based virtual care company founded in 2020 that marketed on social media platforms including Instagram and TikTok. Cerebral offered online prescriptions for ADHD drugs among other services and boasted more than 200,000 patients. But as Dani Blum reported in the New York Times, Cerebral was accused in 2023 of pressuring doctors on staff to prescribe stimulants and faced an investigation by state prosecutors into whether it violated the U.S. Controlled Substances Act.

“At the start of the pandemic, regulators relaxed rules around medical prescription of controlled substances,” wrote Blum. “Those changes opened the door for companies to prescribe and market drugs without the protocols that can accompany an in-person visit.”

Access increased – but is it equitable?

Virtual care has been a necessity in rural areas in Ontario since well before the pandemic, although ADHD assessments for children were restricted to in-person appointments prior to 2020.

But ADHD assessment clinics that charge families out-of-pocket for services are only accessible to people with higher incomes. Rural families, many of whom are low income, are unable to afford thousands for private assessments, let alone the other services upsold by providers. If the private clinic/virtual care trend continues to grow unchecked, it may also attract doctors away from the public model of care since they can bill more for services. This could further aggravate the gap in care that lower income people already experience.

This could further aggravate the gap in care that lower income people already experience.

Sukhera says some risks could be addressed by instituting OHIP coverage for services at private clinics (similar to private surgical facilities that offer mixed private/public coverage), but also with safeguards to ensure that profits are reinvested back into the health-care system.

“This would be especially useful for folks who do not have the income, the means to pay out of pocket,” he said.

Concerns of misdiagnosis and over-prescription

Some for-profit companies also benefit financially from diagnosing and issuing prescriptions, as has been suggested in the Cerebral case. If it is cheaper for a clinic to do shorter, virtual appointments and they are also motivated to diagnose and prescribe more, then controls need to be put in place to prevent misdiagnosis.

The problem of misdiagnosis may also be related to the nature of ADHD assessments themselves. University of Strathclyde professor Matthew Smith, author of Hyperactive: The Controversial History of ADHD, notes that since the publication of Diagnostic and Statistical Manual of Mental Disorders in 1980, assessment has typically involved a few hours of parents and patients providing their subjective perspectives on how they experience time, tasks and the world around them.

“It’s often a box-ticking exercise, rather than really learning about the context in which these behaviours exist,” Smith said. “The tendency has been to use a list of yes/no questions which – if enough are answered in the affirmative – lead to a diagnosis. When this is done online or via Zoom, there is even less opportunity to understand the context surrounding behaviour.”

Smith cited a 2023 BBC investigation in which reporter Rory Carson booked an in-person ADHD assessment at a clinic and was found not to have the condition, then had a private online assessment – from a provider on her couch in a tracksuit – and was diagnosed with ADHD after just 45 minutes, for a fee of £685.

What do patients want?

If Canadian regulators can effectively tackle the issue of privatization and the risk of misdiagnosis, there is still another hurdle: not every youth is willing to take part in virtual care.

Jennifer Reesman, a therapist and Training Director for Neuropsychology at the Chesapeake Center for ADHD, Learning & Behavioural Health in Maryland, echoed Sukhera’s concerns about substandard care, cautioning that virtual care is not suitable for some of her young clients who had poor experiences with online education and resist online health care. It can be an emotional issue for pediatric patients who are managing their feelings about the pandemic experience.

“We need to respect what their needs are, not just the needs of the provider,” says Reesman.

In 2020, Ontario opted for virtual care based on the capacity of our health system in a pandemic. Today, with a shortage of doctors, we are still in a crisis of capacity. The success of virtual care may rest on how engaged regulators are with equity issues, such as waitlists and access to care for rural dwellers, and how they resolve ethical problems around standards of care.

Children and youth are a distinct category, which is why we had restrictions on virtual ADHD diagnosis prior to the pandemic. A question remains, then: If we could snap our fingers and have the capacity to provide in-person ADHD care for all children, would we? If the answer to that question is yes, then how can we begin to build our capacity?