Editor’s Note: This article is written by Michael Pan, a second year medical student in Saint Louis University School of Medicine and an independent researcher at the EPX Research Center @ Washington University in St. Louis. In this piece, Michael shares his thoughts on helping the care for children with autism.
A patient’s memory is an imperfect source to base clinical decisions off of. And the memory of a stressed out parent raising a child with an autism spectrum disorder can probably be even less reliable at times. Depending on the severity of a child’s autism, physician visits may be spaced out as long as six months between each visit. What happens exactly between each visit? Can a physician truly rely on a parent’s memory during that time to provide the best care for the child?
Many child psychiatrists that we’ve consulted with agree that if they were able to ask one question to their autistic patients’ parents every day, they would ask about the number of meltdowns that each patient has had each day. The number of meltdowns is an indication of how the child is faring on a day-to-day basis, and would allow the physician to have a discrete way of measuring how a child is responding to current therapy or a new intervention that is being utilized at any given time.
However, during patient follow ups, parents tend to remember the extreme: they often talk about “that one bad meltdown” or that “one horrible day” that their child experienced in between visits. As a result, the smaller and less memorable meltdowns that are also critical for assessing the patient’s health are dismissed in the parents’ minds as minutiae, and are not reported to the physician. After all, only so much information can be discussed and distilled in a short 30-minute appointment.
Now, Epharmix has a system for patients with autistic spectrum disorders that allows child psychiatrists to have almost real time data concerning these details. Never before has a physician been able to so closely and accurately follow their patients’ health outside of the clinic over such a long period of time. Every patient now becomes the “ideal patient” – a patient that is consistently documenting his/her own health over time. And all just through some simple texts exchanged every day.
With this improved resolution of data from each patient, a physician may now make more data-driven, educated decisions to prescribe (or not) interventions and therapies for their patients. And, perhaps even more importantly, physicians will now be able to assess the efficacy of their own decisions moving forward and have a way of truly measuring how effective and impactful their medical decisions are in caring for their patients.
Particularly important to psychiatrists treating their patients with autism is the hope that the physician is not over-treating their patients and providing too many sedating medications when they aren’t necessary. Therefore, one of the potential benefits in using Epharmix as a tool to track an autistic patient’s health is to make sure that an optimal balance is reached between prescribing medications to the patient and pursuing other interventions such as behavioral therapy.
We are now moving into a new technological era in which physicians will be able to refine their care to individually address the needs of each patient. Especially in the case of autism, which is a disorder whose manifestations vary across a broad spectrum, this ability to closely manage and track the progress made by each patient is a necessary evolution of medicine. One day, when that evolution is complete, doctors may rest assured that they will have a means to know how their patients are doing – even when they aren’t looking.