It's amazing

[bdelatte]

Its really amazing to me that I cannot find anyone in my County to give me the stats on how many people living here have Type ONE diabetes. All they can do is shove me a manual that says 9% of people living in my county has diabetes. Yet they cant tell me how many of that percentage is type 1. I know they have records of this but its like pulling teeth! The reason i am trying to find out is b/c i am holding a giant garage sale with all proceeds benefiting JDRF and i will be on the radio for it and they are wanting to know these answers. Yeah i could get on the radio and say that 9% of people in our county have diabetes but the whole point of this fundraiser is to promote information and facts about type 1 and awareness....not about type 2. It seems to be the only type that people are aware of so it would be nice to give people the info on type 1. Shouldn't my community have this information???? Or am i wrong here??

[Subby]

I agree it would be good. I've wanted better stats than I can find at times, it's extra frustrating when you don't know if they have them or not. If you can't find anything, the oft quoted rough percentage of type 1 diabetics in the diabetes population is commonly quoted as around 10 - 12 percent. So I guess very roughly you are likely looking at 10% of 9% or about .9% of total population. But don't quote me on that.

[k_dub]

Its really amazing to me that I cannot find anyone in my County to give me the stats on how many people living here have Type ONE diabetes. All they can do is shove me a manual that says 9% of people living in my county has diabetes. Yet they cant tell me how many of that percentage is type 1. I know they have records of this but its like pulling teeth! The reason i am trying to find out is b/c i am holding a giant garage sale with all proceeds benefiting JDRF and i will be on the radio for it and they are wanting to know these answers. Yeah i could get on the radio and say that 9% of people in our county have diabetes but the whole point of this fundraiser is to promote information and facts about type 1 and awareness....not about type 2. It seems to be the only type that people are aware of so it would be nice to give people the info on type 1. Shouldn't my community have this information???? Or am i wrong here??

Hi Bdelatte,

I work for a state health department, and I'm an epidemiologist (disease statistician). I don't work in chronic disease epidemiology, but I know our chronic disease/diabetes epidemiologist well.

The fact is that there really is no good data source for that. State health departments typically have data from vital records (births and deaths), hospital discharge data (inpatient and ER visits - diagnosis code is used but the diagnosis is related to that particular visit and may not specify long standing health issues), trauma registry and EMS data, data from the Behavioral Risk Factor Surveillance Study (BRFSS), Medicaid/SCHIP data (doctors visit on only subset of the population), and may or may not have other special survey data. In some states, much of this data sits around waiting to be analyzed because state and local health departments don't have adequate staff to data mine all of it.

Getting the data that you are looking for is actually pretty complicated. There is no "diabetes registry". (Although, most states have a registry for cancer diagnoses). That would require your state or local health department to acquire data from every private doctors' offices in your community or state (data is not standardized so some providers have paper-based charts, some have electronic charts)...so that would be a monumental task and extremely costly.

That statistic above likely comes from the BRFSS survey, which all states do. I've seen the questions of this survey. And it is a population-based survey where they cold call people in the community to ask health-related questions. It's getting harder and harder to that survey because people refuse to participate.
There are several questions related to diabetes and there is flow logic depending on how people answer the questions. The primary D question goes something like, "Have you been told by a doctor that you have diabetes?". You can find the core questionnaire and optional modules by state here. BRFSS- CDC's Behavioral Risk Factor Surveillance System.
They don't ask what type of diabetes, I don't think. I know there has been ongoing discussion of what that is...but many, many, many patients don't know... so the question would not be useful for epidemiologists or program people because it would be skewed.

Hope that all makes sense...

[k_dub]

Also, in the US...the current data systems for health are largely created for payment and financial reasons and not for epidemiologic (health stat) reasons.
Health departments also tend to focus data collection on things that are preventable or where there are public health (population based) interventions. At this time, we have no methods for primary prevention of T1... we have methods for tertiary prevention (once you have it, you can prevent further complications) - and that is patient education and BG self management.

Even hypothetically, if the health department could get data from every clinician's office...we would still have to rely on ICD9 and ICD10 codes (again, primary use is billing) and there are a slew of issues with those codes. Not to mention many of us are misdiagnosed.
For example, if you looked at my medical records, I likely have ICD9/10 codes for both T1 and T2... For an epidemiologist to sort that out without talking to the patient directly, would be next to impossible.

[4stringed]

Great info Kelly!

Sent from my Motorola Electrify using Diabetes forums

[DeusXM]

This could be something you could raise in the interview - point out that T1 is a serious health concern but the medical authorities can't even manage to record meaningful data on its prevalence.

[bdelatte]

This could be something you could raise in the interview - point out that T1 is a serious health concern but the medical authorities can't even manage to record meaningful data on its prevalence.

I was actually thinking about doing just that!

[Moonpie]

wishing you well on the fundraiser & getting more info out.

[JJM335]

You could probably get a reasonably accurate estimate by extrapolating from the population of your county and the national figures for % of population with T1D. A quick Google search comes up with ~800,000 with T1D in the USA which works out at around 0.25% of the population.

Picking up on Deus's point, its interesting that these figures are estimates (?guestimates?) and the true numbers don't seem to have been collated. Here in the UK the National Health Service publishes precise numbers.

Joel

[DeusXM]

It's particularly interesting as there seems to be a dispute over whether T1 rates are rising or not. I've heard opinions from either way on this and it'd be great to get clarity.

[k_dub]

The issue is that there is not an adequate dataset for T1 prevalance at the community-level in the US... state and local health departments collect population data and are under-resourced. Comparing the UK's system to the US data system is comparing apples and oranges.
The data has to come from somewhere and be collected and analyzed. Collecting data from EVERY provider in your community who MAY diagnose or treat diabetes...that's a huge task. That is why there are just large-scale population estimates.
There are research centers that specialize in T1 and who are conducting prevalence studies. But those studies would not give you data on your specific community.
(Google the Barbara Davis Center for Childhood Diabetes in Denver...I see my endo there, but they do a lot of research on prevalence).

To get data at the community level (in the US), the state or local health department typically has to make a disease or condition "reportable". For example, many infectious diseases are reportable and tracked at the state, county and community level. Most states have the cancer registry, where new cancer diagnoses are also reportable. In the US, this typically takes a state mandate to achieve that. I don't know of a single state that mandates reporting of diabetes diagnoses - hence the lack of community-level data on it's prevalence.

I think addressing the lack of good data in the press is a fine idea. It's the truth.. The issue, in the US, is truly that the data is difficult to acquire at the community-level. It's more complicated than "someone should have these numbers".

bdelatte - good luck on your fundraiser. Let us know how it turns out!

[Subby]

Well, maybe what Kelly raises can also be included in the comments about the difficulty of getting stats. Rather than just not mention it because it's currently "too hard", maybe there should be some kind of program or ability created in the US which facilitates the gaining of important information such as T1 stats, to answer important questions such as "is T1 really increasing? How much?"

I realise the pitch for bodies or activities that collate more information on people might be hard in the US, but maybe it is a conversation that should be had in terms of important disease information.

[JJM335]

It's particularly interesting as there seems to be a dispute over whether T1 rates are rising or not. I've heard opinions from either way on this and it'd be great to get clarity.

UK data are unequivocal - rates of T1 (new diagnoses) are rising in children and in adults. I believe that the increase is around 3% per year.

I should imagine the data are pretty reliable. Unlike T2 (where it can be years before some people are diagnosed and a lot of cases evade the system altogether) T1 tends to get detected because the symptoms are usually severe, unmissable and come on rapidly. There may be a few cases of adult onset that were mis-diagnosed as T2 in the past, but the figures for children show a signficant upward trend.

Rates of a number of diseases that involve the immune system (e.g. asthma) seem to be showing an upward trend so it isn't that suprising that this is also the case for T1D.

Joel

[Gigem99]

This is from the JDRF website:

As many as three million Americans may have type 1 diabetes. 1
Each year, more than 15,000 children and 15,000 adults - approximately 80 people per day - are diagnosed with type 1 diabetes in the U.S.2
85 percent of people living with type 1 diabetes are adults.3
The rate of type 1 diabetes incidence among children under the age of 14 is estimated to increase by 3% annually worldwide.4

The sources they quote are:
1 Type 1 Diabetes, 2010; Prime Group for JDRF, Mar. 2011

2 NIDDK: National Diabetes Statistics, 2011 - National Diabetes Information Clearinghouse

3 Type 1 Diabetes, 2010; Prime Group for JDRF, Mar. 2011

4 IDF: Diabetes in the Young: a Global Perspective | International Diabetes Federation

Don't know whether those stats will help or not.... thought I'd post in case you can use the stats.

I think generally there are figured to be about 25 million people in the U.S. with diabetes. If the JDRF is correct, you can extrapolate that just over 10% have type 1. So, if you know that 9% of the people in your county have diabetes, take about 10% of that number, and that should give you a rough estimate of how many people in your county have type 1.