We don’t have a lot of statistical information about diabetes in Ireland; we don’t even know how many people live with it and so we really don’t know where to allocate money and staff in diabetes so it has be biggest impact on improving our quality of life.
We very much need a national diabetes register to do this!!!
A lot of the Irish research on diabetes is hindered by the lack of a register or any data on numbers. However, we do have a couple of pieces of reliable data on type 1 diabetes and I would like to focus on this in this week’s post.
We have an Irish Childhood Diabetes National Register which has been collecting data on children with type 1 diabetes since 2008, and we also have a significant piece of research published in 2020, “Epidemiology of type 1 diabetes in Ireland” by Kate Gajewska which gave us a glimpse of the number of people living with type 1 diabetes in 2016.
I wanted to talk about these two piece of published research because there is currently a type 1 diabetes awareness campaign which I feel is very misleading and reinforces misinformation.
How many People have Type 1 Diabetes?
300 Children & Teens Diagnosed with type 1 diabetes annually
According to the Irish Childhood Diabetes National Register there is an average of 300 children and teenagers (up to age 14 years) diagnosed every year in Ireland.
1,500 People Diagnosed with Type 1 Diabetes in 2016
Kate Gajewska’s study on “Epidemiology of type 1 diabetes in Ireland” revealed that there were 1,527 people diagnosed with type 1 diabetes in 2016. Kate’s paper was the first type 1 diabetes study to focus on all age groups; previous studies on type 1 diabetes in Ireland focused only on the paediatric population so, for me, this is one of several reasons why this study stands out.
The second reason this study stands out for me is in table 1: Prevalence of type 1 diabetes in the Irish population in 2016 stratified by age group, which revealed that 67% of the new diagnosis in 2016 were people aged over 25 years, 54% in people aged over 35 years.
Read full paper here
67% of Type 1 Diabetes Diagnosed in Ireland are over age 25 Years
I know this is just a one year’s snapshot but it does support a growing global consensus is that diagnosis of type 1 diabetes can and does happen at any age and additional recent research supports this:
“Although it used to be referred to as ‘juvenile diabetes’, around half of newly diagnosed cases are in people over the age of 18” from JDRF UK
“Type 1 diabetes is not predominantly a ‘disease of childhood’ as previously believed, but is similarly prevalent in adults, new research published in the Lancet Diabetes & Endocrinology shows.” Dec 1, 2017. From UK BioBank
“Type 1 diabetes as common in adults as children, but many adults are misdiagnosed, UK Biobank data shows” also from UK BioBank
“Frequency and phenotype of type 1 diabetes in the first six decades of life: a cross-sectional, genetically stratified survival analysis from UK Biobank from The Lancet
38 percent of adults with type 1 diabetes are misdiagnosed with type 2 May 2019
Prof Partha Kar, NHS Specialist Diabetes Advisor NHS England
Type 1 Diabetes is NOT a childhood illness
It’s really important to create awareness of the symptoms of diabetes in the general population which includes the parents market group. However, it is also important to include accurate information and not to mislead the public with inaccurate information like a current national campaign is doing which I will not name.
This is really important because we are seeing a rise in misdiagnosis of adults with type 2 diabetes because our medical professionals believe that type 1 does not happen in adults. Many of those adults end up hospitalised due to life threatening diabetic ketoacidosis (DKA) which is a medical emergency or maybe they don’t - we don’t know because we don’t have the data that a National Diabetes Register would provide.
National Diabetes Register
Kate’s paper, as many other Irish research papers have done for a number of DECADES, concludes with a call to establish a National Diabetes Register.
“Conclusions This study provides epidemiological estimates of type 1 diabetes across age groups in Ireland, with the majority of prevalent cases in adults. Establishing a national diabetes register is essential to enable updated epidemiological estimates of diabetes and for planning of services in Ireland” Gajewska, K. 2020
Without a national diabetes register we don’t know how many people end up hospitalised due to life threatening diabetic ketoacidosis (DKA) which is a medical emergency. The symptoms are dehydration, vomiting, abdominal pain and breathing problems. If untreated these can progress to coma and can be fatal.
“A diabetes register is central to the development of a comprehensive diabetes management system in primary care, which can lead to improvements in the processes and outcomes of diabetes care.”Epidemiology of diabetes and complications among adults in the Republic of Ireland 1998-2015: a systematic review and meta-analysis.
Marsha L. Tracey, Michael Gilmartin, Kate O’Neill, Anthony P. Fitzgerald, Sheena M. McHugh
”The lack of a National Diabetes Registry represents a significant problem for our health service as we attempt to tackle diabetes, an increasingly common and costly chronic disease. Establishment of a registry would help with tracking the prevalence of the condition, measuring outcomes and cost of care and planning for future services. A National Diabetes Registry also has the potential to provide an architecture and approach for the subsequent development of a national chronic disease registry.” Diabetes Ireland Pre Budget Submission Read here.
Why the heck do we still NOT have a National Diabetes Register and why was the funding from Slaintecare to set one up suspended indefinitely in 2020???