On one of my dental shadowing days I watched as Dr. Sean Whalen expertly worked with a patient who had Angelman's syndrome. This syndrome causes the patient to be non verbal and to have a significantly lower IQ. He calmly explained the dental procedure he was going to do, cracked a few jokes and made everyone in the room feel comfortable and happy. Dr. Whalen is fantastic at his craft, but what if a doctor isn't good at understanding an intellectually disabled person, and they miss major health issues and cause worse health outcomes overall.
Unfortunately, doctors like Dr. Whalen are in the minority. Most doctors have little to no experience with disabled individuals and do not have the time and know-how to properly diagnose someone who has a real medical need but a lack of communication ability. The number of intellectually disabled individuals is increasing a fast rate as people live longer and receive better medical care. Already the number of people with an ID is 2% of the general population (Krahn, 2006). It is likely that you too could become disabled at some point in your life through old age, a tragic accident or an unexpected illness and join the population of people unable to communicate their medical needs to the medical professionals.
I spent a summer working with numerous kids and adults with intellectual and physical disabilities. As a future health professional, I find preventative health care essential to quality of life and to reducing chronic illness. One of the biggest unmet needs I saw, was a lack of quality nutrition. Many of the participants would eat sugary snacks and processed foods with very few fruits and veggies in their diet. This manifested in many of the participants having constipation on a regular basis. This phenomenon is not just anecdotal, a study done on fatal intestinal obstruction found that the chances of dying due to these intestinal blockages was much higher in the mentally disabled population versus the general population. Furthermore, only 8 of 32 people who died were correctly diagnosed before they died (Jancar, 1994). Doctors should be trained to be better at diagnosing these potentially fatal conditions in mentally disabled individuals as well as educating parents or care givers about including more fiber in their loved one's diet so they can improve their quality of life and their longevity.
Jancar, J. (1994). Fatal intestinal obstruction in the mentally handicapped. Journal of intellectual disability research : JIDR. https://pubmed.ncbi.nlm.nih.gov/7949792/#:~:text=The%20results%20suggest%20that%20fatal,deceptively%20minimal%20signs%20and%20symptoms.
Krahn , G. (2006, January). A cascade of disparities: Health and Health Care Access for people with intellectual disabilities. Mental retardation and developmental disabilities research reviews. https://pubmed.ncbi.nlm.nih.gov/16435327/
A very interesting read! After reading this I did research on the topic and found that this happens everywhere, with many different problems (Physical, and mental). This means that people all over the world are being mis diagnosed due to ones disabilities. But how do we fix this? Are there ways in which doctors can be trained in ways to help them better understand and communicate with those who may be disabled?
ReplyDeleteGaan Akers, L. (2023, April 17). The impact of mental health misdiagnosis. Hillside Atlanta - Behavioral Health Support for Youth, Adolescents, and Their Families. https://hside.org/impact-of-mental-health-misdiagnosis/
This is very eye opening to read. The problem with healthcare disparities is not just prevalent in patients who are intellectually disabled but also in patients who come from low socioeconomic statuses. Social determinants of health (SDH) play such an important role in health outcomes but are often underestimated. Thank you for sharing this post :) I think through understanding the social environment factors and the background of where patients come from will allow physicians to have more accurate diagnosis for patients who are intellectually disabled. According to a paper (Andermann, 2016), the improvement of SDH could be done not only at the provider-patient interaction, but also at the bigger systemic scope as well. Policies should be incorporated to train physicians to better understand and serve underrepresented population.
ReplyDeleteAndermann, A., & CLEAR Collaboration (2016). Taking action on the social determinants of health in clinical practice: a framework for health professionals. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 188(17-18), E474–E483. https://doi.org/10.1503/cmaj.160177