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CCDSS Diabetes Survey | Questionnaire du SCSMC sur le diabète

The following survey is intended to help guide data collection efforts to enhance diabetes surveillance in Canada (e.g. differentiate between types of diabetes, report on an increasing number of complications and comorbidities, explore diabetes management).

To do so, we are asking the CCDSS Technical Working Group experts to provide information (characteristics, availability, data items, etc.) on administrative and non-conventional data sources available in their jurisdiction.

IMPORTANT : Please provide comprehensive answers to all questions, and consult with peers when required.

There are 62 questions in this survey.

General

(This question is mandatory)

Province/Territory

Choose one of the following answers

Other:

(This question is mandatory)

Full Name (Surname, Given Name(s))

(This question is mandatory)

Title

(This question is mandatory)

Email address

Physician Billing Claims Database(s)

(This question is mandatory)

What are the NAME(S) of the database(s)?

(This question is mandatory)

What FISCAL YEAR(S) are available in the database(s) (e.g. 1995-96 to 2022-23)?

(This question is mandatory)

What is the population COVERAGE of the database(s)?

Choose one of the following answers

Full population
Partial population

Please enter your comment here:

(This question is mandatory)

What VERSION(S) of the International Classification of Disease (ICD) codes are used in the database(s)?

Choose one of the following answers

ICD-10
ICD-10-CA
ICD-10-CM
ICD-9
ICD-9-CM
ICD-8

Please enter your comment here:

(This question is mandatory)

How many ICD code DIGITS are available?

Choose one of the following answers

Please enter your comment here:

(This question is mandatory)

What are the available DATA ITEM(S)?

MANDATORY: For each data item, please provide details such as indicator name, key word, ICD code of interest, etc.

Comment only when you choose an answer.

Socio-demographic characteristics (age, sex, gender, ethnicity, income, employment, other)
Diabetes diagnosis status (text fields, ICD codes, self-reported, measured, other)
Diagnosis test results (blood glucose measures, auto-antibodies, C-peptide, other)
Prescription drugs and supplies (Insulin, metformin, glucose or ketone test strips, glucagon, insulin pumps, other)
Acute complications (hyperglycemia, hypoglycemia, ketoacidosis, hyperosmolar state, other)
Long term complications (kidney failure, retinopathy, neuropathy, amputations, other)
Blood glucose control (HbA1C, fasting blood glucose, time in range, other)
Kidney function (glomerular filtration rate, albumin/creatinine ratio, other)
Comorbidities (co-occurrence, order of occurrence of conditions (sequencing), other)
Other:

(This question is mandatory)

Are there any PUBLICATION(S) of interest that use these database(s) to report on diabetes-related indicators? If yes, please provide a link to the publication.

Choose one of the following answers

Please enter your comment here:

Are there important NOTES that you would like to share with PHAC (e.g. reporting considerations, limitations, advantages, nuances, important changes planned)?

Hospital Discharge Abstract Database (DAD)

(This question is mandatory)

What are the NAME(S) of the database(s)?

(This question is mandatory)

What FISCAL YEAR(S) are available in the database(s) (e.g. 1995-96 to 2022-23)?

(This question is mandatory)

What is the population COVERAGE of the database(s)?

Choose one of the following answers

Full population
Partial population

Please enter your comment here:

(This question is mandatory)

What VERSION(S) of the International Classification of Disease (ICD) codes are used in the database(s)?

Choose one of the following answers

ICD-10
ICD-10-CA
ICD-10-CM
ICD-9
ICD-9-CM
ICD-8

Please enter your comment here:

(This question is mandatory)

How many ICD code DIGITS are available?

Choose one of the following answers

Please enter your comment here:

(This question is mandatory)

What are the available DATA ITEM(S)?

MANDATORY: For each data item, please provide details such as indicator name, key word, ICD code of interest, etc.

Comment only when you choose an answer.

Socio-demographic characteristics (age, sex, gender, ethnicity, income, employment, other)
Diabetes diagnosis status (text fields, ICD codes, self-reported, measured, other)
Diagnosis test results (blood glucose measures, auto-antibodies, C-peptide, other)
Prescription drugs and supplies (Insulin, metformin, glucose or ketone test strips, glucagon, insulin pumps, other)
Acute complications (hyperglycemia, hypoglycemia, ketoacidosis, hyperosmolar state, other)
Long term complications (kidney failure, retinopathy, neuropathy, amputations, other)
Blood glucose control (HbA1C, fasting blood glucose, time in range, other)
Kidney function (glomerular filtration rate, albumin/creatinine ratio, other)
Comorbidities (co-occurrence, order of occurrence of conditions (sequencing), other)
Other:

(This question is mandatory)

Are there any PUBLICATION(S) of interest that use these database(s) to report on diabetes-related indicators? If yes, please provide a link to the publication.

Choose one of the following answers

Please enter your comment here:

Are there important NOTES that you would like to share with PHAC (e.g. reporting considerations, limitations, advantages, nuances, important changes planned)?

Prescription Drug Database(s)

Prescription drug databases provide information on the usage patterns of diabetes medications and supplies, which differ by type of diabetes.
- Individuals with type 1 diabetes are more likely to take insulin without oral medication, while individuals with type 2 diabetes may take both, but will rarely take only insulin for the full duration of the treatment.
- Prescriptions for glucagon and acetone test strips have also been found to be highly specific for type 1 diabetes.
Multiple jurisdictions have universal population-based linkable prescription databases.
We wish to learn more about the availability of this type of data in your jurisdiction.

(This question is mandatory)

Are there prescription drug database(s) AVAILABLE in your jurisdiction?

Choose one of the following answers

Yes
No
Maybe

Please enter your comment here:

(This question is mandatory)

What are the NAME(S) of the database(s)?

(This question is mandatory)

What FISCAL YEAR(S) are available in the database(s) (e.g. 1995-96 to 2022-23)?

(This question is mandatory)

What is the population COVERAGE of the database(s)?

Choose one of the following answers

Full population
Partial population

Please enter your comment here:

(This question is mandatory)

Are the database(s) LINKABLE to the Canadian Chronic Disease Surveillance System (CCDSS)?

Choose one of the following answers

Other:

(This question is mandatory)

What are the available DATA ITEM(S)?

MANDATORY: For each data item, please provide details such as indicator name, key word, ICD code of interest, etc.

Comment only when you choose an answer.

Socio-demographic characteristics (age, sex, gender, ethnicity, income, employment, other)
Diabetes diagnosis status (text fields, ICD codes, self-reported, measured, other)
Diagnosis test results (blood glucose measures, auto-antibodies, C-peptide, other)
Prescription drugs and supplies (Insulin, metformin, glucose or ketone test strips, glucagon, insulin pumps, other)
Acute complications (hyperglycemia, hypoglycemia, ketoacidosis, hyperosmolar state, other)
Long term complications (kidney failure, retinopathy, neuropathy, amputations, other)
Blood glucose control (HbA1C, fasting blood glucose, time in range, other)
Kidney function (glomerular filtration rate, albumin/creatinine ratio, other)
Comorbidities (co-occurrence, order of occurrence of conditions (sequencing), other)
Other:

(This question is mandatory)

Are there any PUBLICATION(S) of interest that use these database(s) to report on diabetes-related indicators? If yes, please provide a link to the publication.

Choose one of the following answers

Yes
No
Don't know

Please enter your comment here:

Are there important NOTES that you would like to share with PHAC (e.g. reporting considerations, limitations, advantages, nuances, important changes planned)?

Laboratory Database(s)

Laboratory data may be a good data source to:
- Ascertain cases of diabetes;
- Explore blood glucose control (e.g. HbA1C, fasted plasma glucose);
- Indicate the presence of complications (e.g. renal function, ketoacidosis);
- Help differenciate between type of diabetes (E.g. auto-antibodies, C-peptides, DNA, ketoacidosis).
We wish to learn more about the availability of this type of data in your jurisdiction.

(This question is mandatory)

Are there laboratory database(s) AVAILABLE in your jurisdiction?

Choose one of the following answers

Yes
No
Maybe

Please enter your comment here:

(This question is mandatory)

What are the NAME(S) of the database(s)?

(This question is mandatory)

What FISCAL YEAR(S) are available in the database(s) (e.g. 1995-96 to 2022-23)?

(This question is mandatory)

What is the population COVERAGE of the database(s)?

Choose one of the following answers

Full population
Partial population

Please enter your comment here:

(This question is mandatory)

Are the database(s) LINKABLE to the Canadian Chronic Disease Surveillance System (CCDSS)?

Choose one of the following answers

Other:

(This question is mandatory)

What are the available DATA ITEM(S)?

MANDATORY: For each data item, please provide details such as indicator name, key word, ICD code of interest, etc.

Comment only when you choose an answer.

Socio-demographic characteristics (age, sex, gender, ethnicity, income, employment, other)
Diabetes diagnosis status (text fields, ICD codes, self-reported, measured, other)
Diagnosis test results (blood glucose measures, auto-antibodies, C-peptide, other)
Prescription drugs and supplies (Insulin, metformin, glucose or ketone test strips, glucagon, insulin pumps, other)
Acute complications (hyperglycemia, hypoglycemia, ketoacidosis, hyperosmolar state, other)
Long term complications (kidney failure, retinopathy, neuropathy, amputations, other)
Blood glucose control (HbA1C, fasting blood glucose, time in range, other)
Kidney function (glomerular filtration rate, albumin/creatinine ratio, other)
Comorbidities (co-occurrence, order of occurrence of conditions (sequencing), other)
Other:

(This question is mandatory)

Are there any PUBLICATION(S) of interest that use these database(s) to report on diabetes-related indicators? If yes, please provide a link to the publication.

Choose one of the following answers

Yes
No
Don't know

Please enter your comment here:

Are there important NOTES that you would like to share with PHAC (e.g. reporting considerations, limitations, advantages, nuances, important changes planned)?

Electronic Medical Records (EMR) Database(s)

Electronic Medical Records (EMR) data allow for the collection of multiple data elements, including diabetes types, blood sugar control and the occurence of complications or comorbidities.
Here are some examples of diabetes databases:
- Canadian Primary Care Sentinel Surveillance Network (CPCSSN)
- LMC Diabetes Registry (EMR data from clinics in ON, AB, QC)
We wish to learn more about the availability of this type of data in your jurisdiction.

(This question is mandatory)

Are there electronic medical records(s) AVAILABLE in your jurisdiction?

Choose one of the following answers

Yes
No
Maybe

Please enter your comment here:

(This question is mandatory)

What are the NAME(S) of the database(s)?

(This question is mandatory)

What FISCAL YEAR(S) are available in the database(s) (e.g. 1995-96 to 2022-23)?

(This question is mandatory)

What is the population COVERAGE of the database(s)?

Choose one of the following answers

Full population
Partial population

Please enter your comment here:

(This question is mandatory)

Are the database(s) LINKABLE to the Canadian Chronic Disease Surveillance System (CCDSS)?

Choose one of the following answers

Other:

(This question is mandatory)

What are the available DATA ITEM(S)?

MANDATORY: For each data item, please provide details such as indicator name, key word, ICD code of interest, etc.

Comment only when you choose an answer.

Socio-demographic characteristics (age, sex, gender, ethnicity, income, employment, other)
Diabetes diagnosis status (text fields, ICD codes, self-reported, measured, other)
Diagnosis test results (blood glucose measures, auto-antibodies, C-peptide, other)
Prescription drugs and supplies (Insulin, metformin, glucose or ketone test strips, glucagon, insulin pumps, other)
Acute complications (hyperglycemia, hypoglycemia, ketoacidosis, hyperosmolar state, other)
Long term complications (kidney failure, retinopathy, neuropathy, amputations, other)
Blood glucose control (HbA1C, fasting blood glucose, time in range, other)
Kidney function (glomerular filtration rate, albumin/creatinine ratio, other)
Comorbidities (co-occurrence, order of occurrence of conditions (sequencing), other)
Other:

(This question is mandatory)

Are there any PUBLICATION(S) of interest that use these database(s) to report on diabetes-related indicators? If yes, please provide a link to the publication.

Choose one of the following answers

Yes
No
Don't know

Please enter your comment here:

Are there important NOTES that you would like to share with PHAC (e.g. reporting considerations, limitations, avdantages, nuances, important changes planned)?

Insulin Pump Database(s)

Insulin pumps are mainly used by individuals with type 1 diabetes to manage blood sugar levels (highly specific for type 1).
Weisman et al. (2020) used insulin pump data to develop algorithms to differentiate between types of diabetes in ON.
Insulin pumps programs are available in all jurisdictions, but can be restricted to certain demographics (e.g. age groups, specific type of diabetes)
- Full population coverage (YK, NT, NU, BC, AB, SK, ON)
- Partial coverage (NB, NS, PEI, MB, NL, QC)
We wish to learn more about the availability of this type of data in your jurisdiction.

(This question is mandatory)

Are there insulin pump database(s) AVAILABLE in your jurisdiction?

IMPORTANT: Financial aid for insulin pumps and supplies are currently available in all jurisdictions. Please look at the following links and consult with peers when needed to answer the following questions.

BC: Insulin pump program by PharmaCare
AB: Insulin Pump Therapy Program
SK: Insulin pump program
MB: Pediatric Insulin Pump Program (MPIP) & Advanced Glucose Monitor and Expanded Insulin Pump Coverage
ON: Insulin Pump & Supplies coverage through the Assistive Devices Program
QC: Insulin Pump Access Program covered by RAMQ
NL: Insulin Pump Program
NB: Insulin pump program
NS: Insulin Pump Program
PEI: Insulin Pump Program, Diabetes Drug Program
YK: Insulin pump coverage
NT: Insulin pump coverage in all age groups
NU: Insulin pump coverage in all age groups

Choose one of the following answers

Yes
No
Maybe

Please enter your comment here:

(This question is mandatory)

What are the NAME(S) of the database(s)?

(This question is mandatory)

What FISCAL YEAR(S) are available in the database(s) (e.g. 1995-96 to 2022-23)?

(This question is mandatory)

What is the population COVERAGE of the database(s)?

Choose one of the following answers

Full population
Partial population

Please enter your comment here:

(This question is mandatory)

Are the database(s) LINKABLE to the Canadian Chronic Disease Surveillance System (CCDSS)?

Choose one of the following answers

Other:

(This question is mandatory)

What are the available DATA ITEM(S)?

MANDATORY: For each data item, please provide details such as indicator name, key word, ICD code of interest, etc.

Comment only when you choose an answer.

Socio-demographic characteristics (age, sex, gender, ethnicity, income, employment, other)
Diabetes diagnosis status (text fields, ICD codes, self-reported, measured, other)
Diagnosis test results (blood glucose measures, auto-antibodies, C-peptide, other)
Prescription drugs and supplies (Insulin, metformin, glucose or ketone test strips, glucagon, insulin pumps, other)
Acute complications (hyperglycemia, hypoglycemia, ketoacidosis, hyperosmolar state, other)
Long term complications (kidney failure, retinopathy, neuropathy, amputations, other)
Blood glucose control (HbA1C, fasting blood glucose, time in range, other)
Kidney function (glomerular filtration rate, albumin/creatinine ratio, other)
Comorbidities (co-occurrence, order of occurrence of conditions (sequencing), other)
Other:

(This question is mandatory)

Are there any PUBLICATION(S) of interest that use these database(s) to report on diabetes-related indicators? If yes, please provide a link to the publication.

Choose one of the following answers

Yes
No
Don't know

Please enter your comment here:

Are there important NOTES that you would like to share with PHAC (e.g. reporting considerations, limitations, advantages, nuances, important changes planned)?

Diabetes Databases (e,g, care programs, education programs, registries)

Diabetes databases (e.g. care programs, education programs, registries) are data sources that allow for the collection of a number of data elements, including diabetes types, blood glucose control and the occurence of complications or comorbidities.
Here are some examples of diabetes databases:
- NS: Diabetes Care Program of Nova Scotia (DCPNS)
- BC: Pediatrics Diabetes Registry (BC-PDR)
- MB: Diabetes Education Resource for Children and Adolescents (DER-CA)
- QC: BETTER Registry
- PEI: Provincial Diabetes Registry - Provincial Diabetes Program
- ON, AB, QC: The Canadian LMC Diabetes Registry
- NL: Chronic Disease Registry
- NB: Chronic Disease Registry
- CA: Canadian Pediatric Surveillance Program (CPSP); Connect1D; CAPACity
We wish to learn more about the availability of this type of data in your jurisdiction.

(This question is mandatory)

Are there diabetes database(s) (e.g. care programs, education programs, registries) AVAILABLE in your jurisdiction?

Choose one of the following answers

Yes
No
Maybe

Please enter your comment here:

(This question is mandatory)

What are the NAME(S) of the database(s)?

(This question is mandatory)

What FISCAL YEAR(S) are available in the database(s) (e.g. 1995-96 to 2022-23)?

(This question is mandatory)

What is the population COVERAGE of the database(s)?

Choose one of the following answers

Full population
Partial population

Please enter your comment here:

(This question is mandatory)

Are the database(s) LINKABLE to the Canadian Chronic Disease Surveillance System (CCDSS)?

Choose one of the following answers

Other:

(This question is mandatory)

What are the available DATA ITEM(S)?

MANDATORY: For each data item, please provide details such as indicator name, key word, ICD code of interest, etc.

Comment only when you choose an answer.

Socio-demographic characteristics (age, sex, gender, ethnicity, income, employment, other)
Diabetes diagnosis status (text fields, ICD codes, self-reported, measured, other)
Diagnosis test results (blood glucose measures, auto-antibodies, C-peptide, other)
Prescription drugs and supplies (Insulin, metformin, glucose or ketone test strips, glucagon, insulin pumps, other)
Acute complications (hyperglycemia, hypoglycemia, ketoacidosis, hyperosmolar state, other)
Long term complications (kidney failure, retinopathy, neuropathy, amputations, other)
Blood glucose control (HbA1C, fasting blood glucose, time in range, other)
Kidney function (glomerular filtration rate, albumin/creatinine ratio, other)
Comorbidities (co-occurrence, order of occurrence of conditions (sequencing), other)
Other:

(This question is mandatory)

Are there any PUBLICATION(S) of interest that use these database(s) to report on diabetes-related indicators? If yes, please provide a link to the publication.

Choose one of the following answers

Yes
No
Don't know

Please enter your comment here:

Are there important NOTES that you would like to share with PHAC (e.g. reporting considerations, limitations, advantages, nuances, important changes planned)?

Other database(s)

(This question is mandatory)

Are there any OTHER DATA SOURCE(S) that are available in your jurisdiction that could be useful to enhance diabetes surveillance in Canada? If so, please provide details.

E.g. Surveys, Disability tax credits/benefits, Continuous/Flash glucose monitoring data, etc.

Choose one of the following answers

Yes
No
Maybe

Please enter your comment here:

Do you have any additional SUGGESTIONS of realistic and feasible ways to enhance diabetes surveillance in your jurisdiction or across Canada (e.g. differenciate between types of diabetes and report on an increasing number of diabetes indicators)?

If efforts to do so are currently ongoing or planned in jurisdiction, please provide details.

Please confirm you want to clear your response?