When a patient presents with the classic symptoms of diabetes and is undiagnosed or misdiagnosed, serious consequences can result. This occurs all too often due to lack of symptom awareness and must be addressed by health-care professionals as well as the community at large. One of the primary symptoms of ketoacidosis is nausea and/or vomiting, which can deflect the health professional into a mindset of a stomach-flu-like diagnosis. Many certified diabetes educators, physicians and providers connected to the Type 1 diabetes community are aware of cases in which the symptoms were reported and medical attention sought, but Type 1 diabetes was not properly diagnosed.
Diabetes and DKA by the numbers
The number of people with diagnosed Type 1 diabetes globally is staggering. Cases of misdiagnosed children and adults who are often eventually diagnosed with diabetic ketoacidosis (DKA) are often deadly.
Many cases have been reported in which a child or an adult was brought to a health-care provider several times in the days, weeks and sometimes months before being admitted to the ICU in DKA. These scenarios, which were once only shared at scientific meetings, are now the subject of discussions on social media and throughout peer support communities.
Why is Type 1 diabetes misdiagnosed?
While endocrinologists and certified diabetes educators recognize the symptoms of Type 1 diabetes, parents, pediatricians, health-care providers, educators and caregivers may not be aware of the typical symptoms or at least may not recognize them as they become prevalent. In truth, the probability is that they are indeed caused by a stomach flu and nothing more. That said, the danger is no less when the missed diagnosis occurs. In fact, in some cases, the missed diagnosis can be fatal. Therefore, increasing Type 1 diabetes symptom awareness and the basics of DKA is imperative within the community at large. We believe that a basic understanding of Type 1 diabetes, the warning signs of onset and explanation of the dangers of DKA will save lives.
DKA is a serious and dangerous complication of uncontrolled Type 1 diabetes and occurs when the body produces a high level of blood acids or ketones. DKA develops when the body can’t produce enough insulin, causing the body to use muscle and fat as fuel, producing a dangerous buildup of ketones in the bloodstream. Onset of DKA is typically accompanied by nausea, vomiting and severe abdominal pain — all red-flag symptoms of Type 1 diabetes. DKA requires immediate medical treatment to prevent the life-threatening events metabolic acidosis, coma and even death.5
Missing the diabetes diagnosis is not a problem due to lack of technology. Presented with the symptoms, we possess the tools to properly diagnosis and treat Type 1 diabetes in a timely manner. We have urine dip sticks and blood glucose monitors. We have manufactured insulin, continuous glucose monitor sensors, insulin infusion pumps and other technological advancements to help manage Type 1 diabetes once it’s diagnosed. However, the condition cannot be addressed or managed if it remains undiagnosed.
Registries and statistical data
While significant data indicate an increase in the incidence of misdiagnosed Type 1 diabetes, the reason for this is multifaceted and complex. Emerging data are beginning to address the issues surrounding misdiagnosis.
The Philadelphia Pediatric Diabetes Registry
Terri Lipman, assistant dean of community engagement at the University of Pennsylvania School of Nursing, developed the Philadelphia Pediatric Diabetes Registry, which accounts for cases of Type 1 diabetes in children residing in Philadelphia and the surrounding area. This is a U.S. registry of diabetes in children that has collected data continuously since 1985. Lipman’s data show a dramatic increase in the incidence of Type 1 diabetes in children over the past 20 years, as well as a marked increase in children under the age of 5 who have been diagnosed with Type 1 diabetes. This rapid increase in Type 1 diabetes in young children requires immediate attention to the signs and symptoms because these children are at the highest risk of death as a result of their delayed diagnosis.6
Lipman points out that the incidence of Type 1 diabetes in children in the Philadelphia area has increased an average of 1.5% each year, and while it was stable over the first 15 years of the study, it has risen markedly since 2000. This upward trend adds to the evidence of an increasing incidence of diabetes in the U.S. and worldwide.7
While these results are geographically limited, Lipman has stated that she believes her information/research is indicative of what’s happening in other parts of the country as well as globally. It is critical to continue to investigate risk factors that may be associated with the increased incidence of Type 1 diabetes, the marked rise in the incidence in young children, as well as cases where it is misdiagnosed altogether.
Glu/T1D clinical registry
The T1D Exchange Clinic Registry includes patient-reported electronic health data from people living with Type 1 diabetes. Eighty-three percent of 3,030 participants who completed the survey met the inclusion criteria. Ages range from less than 1 year old to 93, spanning a range of demographic parameters, socioeconomic status and care regimes. According to T1D, these findings will be reported in much greater depth and with additional content in a future publication. Some of the results from the registry reporting misdiagnosis were staggering. Based on documented responses, prior to 1980, only 12.2% of respondents were misdiagnosed versus 30.2% after 1980. Even worse, 52.8% of respondents reported that it took over a month to be correctly diagnosed, and 20% of participants reported being admitted to the ICU, with 24% of pediatric patients unconscious on admission (16% of adults).
The T1D registry respondents conveyed other sobering statistics as well. Thirty-five percent reported that they were not diagnosed until more than one month after noticing symptoms. Another 415 participants reported being diagnosed in DKA. Incredibly, 24% of participants reported being misdiagnosed with another condition before receiving an accurate diagnosis of Type 1 diabetes.8
These symptoms need to be addressed early on by health-care providers. Nausea and vomiting are the symptoms of diabetes and should not be confused with the stomach flu or acid reflux. It should also be noted that should the symptoms of Type 1 diabetes be missed, the only indications of the disease become the symptoms of DKA. At this point, education needs to be addressed. Just as a throat culture is done for a differential diagnosis, a simple blood or urine test should be done to help determine a diagnosis of Type 1 diabetes.
Diabetes symptom awareness initiatives: Time to save lives
The North Carolina legislation known as Reegan’s Rule followed the death of 16-month-old Reegan Oxendine, who died unnecessarily from misdiagnosed Type 1 diabetes. Although her mother sought medical treatment on several occasions, her doctors originally diagnosed her with a virus and acid reflux. After Reegan passed away, family, friends and supporters started a social media campaign to require testing for Type 1 diabetes in all young children. This outcry (and the efforts of many in the diabetes community, including Tom Karlya, co-author of this article) eventually led to an agreement by lawmakers that recommends doctors educate parents and guardians on Type 1 diabetes symptoms from birth to 60 months of age. While the bill was not passed as originally crafted, Reegan’s Rule has distinguished North Carolina as the first state in the U.S. to pass this type of bill for diabetes. This law became a benchmark and community outcry for better awareness. What started out with a grassroots effort that continues to this day (GetDiabetesRight.org and others) has become an undertaking by major organizations like Beyond Type 1 as an all-out education campaign.
The American Academy of Pediatrics has adopted the campaign in 18 states and 22,000 pediatric offices thus far (https://beyondtype1.org/our-dka-campaign/) and will continue to expand it.9
As more children and adults were harmed by misdiagnoses, several groups began initiatives to gather scientific proof that this was occurring and, ultimately, to effect policy change. What started out even smaller than a completely grassroots effort has grown into a full-court press to get the word out not only to medical professionals but also to parents.
Getting the word out at school
The National Association of School Nurses (NASN) also became interested in the important message and has crafted a letter describing the symptoms of Type 1 diabetes that can be distributed to parents and guardians by any school nurse belonging to the association. This is especially important during flu season, when parental concerns may be overlooked when reporting symptoms to a health-care provider. This letter can be shared and sent to local school districts.
Dear Parent/Guardian of ________________________________________,
Your child came to the health office today complaining of flu-like symptoms. We send this notice home to make you aware of the symptoms of diabetes. For a small number of children, flu-like symptoms may be the first sign of diabetes, and we want you to be aware of what to look for. Symptoms of diabetes in children include:
• feeling very tired
• heavy, labored breathing
• increased thirst and hunger
• frequent urination and new bedwetting
• sudden weight loss
• blurred vision.
If you notice that your child continues to complain of flu-like symptoms and has additional symptoms from the list above that seem to be getting worse, you may want to ask your pediatrician or health-care provider to perform a simple blood and/or urine test to check for diabetes. In most cases your child’s complaints are caused by a virus, but I also want you to be aware of the less common symptoms that could be the first sign of diabetes. For further information or action to take, call your pediatrician or health-care provider.
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