Paediatric Diabetes – PDEP Clinic Visit

Data Definition: PDN ID and description for clinic

Data Definition: Family Name of the patient

Data Definition: Given Name of the Patient

Data Definition: Given Name of the Patient

Data Definition: Given Name of the Patient

Data Definition: Given Name of the Patient

Data Definition: Biological Sex

Data Definition: The date the patient was born

Data Definition: OHIP

Data Definition: EMR ID/Chart number

Data Definition: Unit Number and street name

Data Definition: City Name

Data Definition: Province

Data Definition: Postal code

Data Definition: Country of residence

Data Definition: Use only if patient currently has not fixed address. Will need to be updated if has a fixed address.

Data Definition: contact number

Data Definition: The race or racial background with which patient, family or caregiver most identifies.

Data Definition: The disease or circumstance which initiated the train of morbid events leading directly to a patient’s death. 

Data Definition: Language(s) the patient / family feel most comfortable speaking with their healthcare provider

Data Definition: Patient born in Canada

Data Definition: Patient length of time in Canada

Data Definition: Additional supplemental or private health insurance

Data Definition: Indicate which government insurance the patient is eligible for

Data Definition: Does the patient have a primary care provider in the community

Data Definition: The date the patient attended initial or follow up diabetes clinic visit

Data Definition: Select visit method

Data Definition: If not listed, manually enter visit method

Data Definition: Indicate all the provider(s) the patient had a visit with.

Data Definition: If provider not listed, manually enter.

Data Definition: The primary type of diabetes diagnosed in the patient. If reclassification is needed based on further testing, the diagnosis must be updated in the Bis.

Data Definition: Aggregated value of Diabetes Type from clinic Visits per patient

Data Definition: If not listed, manually enter diabetes type.

Data Definition: TBD

Data Definition: The date the patient was first diagnosed with diabetes

Data Definition: The date the patient was first diagnosed with diabetes

Data Definition: At the time of diabetes diagnosis, indicate if the patient was diagnosed with any of the following conditions.

Data Definition: If known enter the patients pH level at time of diabetes diagnosis.

Data Definition: If known enter the patients HC03 level in mmol/L at time of diabetes diagnosis

Data Definition: The patients HbA1c measure in percentage at the time of diagnosis

Data Definition: Indicate if the patient auto-antibody status was completed

Data Definition: Describe how insulin is being administered

Data Definition: The type of insulin pump used in the treatment of diabetes.

Data Definition: The other type of insulin pump used in the treatment of diabetes.

Data Definition: Indicate if patient at time of visit is on injections as primary treatment.

Data Definition: The average total number of units of insulin the person uses on a typical day (average TDD past 2 weeks)

Data Definition: External barriers influencing ability to use MDI or insulin pump

Data Definition: Specify the type of glucose monitor that has been used consistently since the last visit.

Data Definition: If the patient is using a rtCGM/isCGM(FGM), please indicate how they are paying for the device

Data Definition: Indicate the percentage of time the patient used a rtCGM/isCGM(FGM) device in the last 14 days. If use is less than 80% then PDR-0048 to PDR-0053 will not be accessible.

Data Definition: The percentage of time in the last 2 weeks the patient’s sensor glucose has been in the target range between 3.9 and 10.0 mmol/L

Data Definition: The percentage of time in the last 2 weeks the patient’s sensor glucose has been between 3.0 and 3.8 mmol/L, inclusive

Data Definition: The percentage of time in the last 2 weeks the patient’s sensor glucose has been below 3.0 mmol/L

Data Definition: The percentage of time in the last 2 weeks the patient’s sensor glucose has been above 10.0 mmol/L

Data Definition: The average patients sensor glucose in the last 14 days, reported by rtCGM/isFGM

Data Definition: The standard deviation reported in the last 14 days.

Data Definition: Patient’s HbA1c measure in NGSP units at time of visit. One decimal; if >14% report as 14.1%

Data Definition: Date of measured HbA1C

Data Definition: Method of HbA1C

Data Definition: Name of the device used for HbA1C measuring

Data Definition: The patient’s body height measured in centimetres (including 1 decimal point) at the time of visit. Height is an important anthropometric measure and needed for calculation of body mass index. 

Data Definition: The patient’s body weight measured in kilograms. Weight is an important anthropometric measure and needed for calculation of body mass index.  

Data Definition: The patient's systolic blood pressure, measured in millimetres of mercury (mmHg).

Data Definition: The patient’s diastolic blood pressure, measured in millimeters of mercury (mmHg).

Data Definition: Patient taking metformin (also known as biguanide)

Data Definition: Patient taking a DPP-4 inhibitor (e.g. (linagliptin, sitagliptin, saxagliptin, alogliptin)

Data Definition: Patient taking a GLP-1 agonist (e.g. liraglutide, dulaglutide, semaglutide, exenatide, lixisenatide)

Data Definition: Patient taking a SGLT2 inhibitor (e.g. canagliflozin, empagliflozin, dapagliflozin)

Data Definition: Patient taking an insulin secretagogue [e.g. (meglitinides, sulfonylureas) (repaglinide, glyburide, gliclizide, glimepiride)]

Data Definition: Severe hypoglycemia is not based on BG level, but is defined as an event with severe cognitive impairment (loss of consciousness, convulsion) requiring assistance by another person to administer oral carbohydrate, glucagon or intravenous dextrose (ISPAD 2022)

Data Definition: ER visit associated with the severe hypoglycemia event

Data Definition: The number of episodes of DKA since last visit.  Excludes DKA at diagnosis.

Data Definition: Date of TSH level

Data Definition: The thyroid- stimulating hormone level measured in the patient’s blood in mU/L  

Data Definition: Does the patient have positive thyroid peroxidase antibodies?

Data Definition: Does the patient have positive thyroid anti-thyroglobulin antibodies?

Data Definition: Has the patient been diagnosed with Autoimmune hypothyroidism? a condition where the immune system attacks the thyroid gland and reduces its ability to produce thyroid hormones

Data Definition: The condition that occurs due to excessive production of thyroid hormones by the thyroid gland

Data Definition: Primary adrenal insufficiency, also known as Addison’s disease, is a rare long-term endocrine disorder causing adrenal insufficiency

Data Definition: Date of autoimmune adrenal insufficiency diagnosis (Addison's Disease)

Data Definition: Celiac disease is an inherited autoimmune disorder that causes problems in the digestive system

Data Definition: If screening is positive indicate if celiac disease is confirmed.

Data Definition: Date of celiac disease screening

Data Definition: A diagnosis of MASLD (Previous term was NAFLD) is a liver problem.

Data Definition: Date of diagnosis of MASLD

Data Definition: A diagnosis of polycystic ovary syndrome, is a hormonal imbalance condition that affects adolescent girls and people assigned female at birth (AFAB) of reproductive age

Data Definition: Date of diagnosis of PCOS

Data Definition: A diagnosis of obstructive sleep apnea is the most common sleep-related breathing disorder.

Data Definition: Diagnosis date of OSA

Data Definition: Is the patients prescribed antihypertensive agent.

Data Definition: Patient taking a lipid lowering agent

Data Definition: The date the lab test was completed. This date applies to Total cholesterol, Trigl, HDL, LDL

Data Definition: Patient’s total cholesterol measure in mmol/L

Data Definition: Patient’s triglycerides measured in mmol/L

Data Definition: Patient’s High Density Lipoproteins (HDL) measured in mmol/L

Data Definition: Patient’s Low Density Lipoproteins (LDL) measured in mmol/L

Data Definition: Non-HDL-C

Data Definition: The date the kidney function test was completed. 1-T1D should start at puberty or from age 11yr, whichever is earlier, with 2-5yr diabetes duration and repeated yearly thereafter. 2-T2D at diagnosis and then yearly

Data Definition: Patient’s urine albumin creatinine ratio (ACR) result

Data Definition: The patient's urine albumin excretion rate result

Data Definition: Consider confirming persistently increased albuminuria by first morning urine sample of ACR. Due to biological variability, it is recommended to use 2 or 3 first morning urine sample over a 3-6 month period to confirm increased albuminuria (ISPAD 2022)

Data Definition: Patient’s alanine aminotransferase level measured in IU/L

Data Definition: Date of patient’s ALT test

Data Definition: Patient’s Aspartate aminotransferase (AST) level measured in IU/L

Data Definition: Date of patient’s Aspartate aminotransferase (AST) test

Data Definition: Referral to adult provider sent

Data Definition: Referral to adult provider sent

Data Definition: To gather information on transfer and potentially avoid lost to care. Does not include transition to adult care.

Data Definition: To gather information on transfer and potentially avoid lost to care. Does not include transition to adult care.

Data Definition: Assesses length of time from referral to adult center and patient being seen at adult center. To avoid lost to care.

Data Definition: Date seen by adult provider

Data Definition: Has retinopathy screening been performed in the last 12 months?

Data Definition: Date of last eye exam in the last 12 month

Data Definition: Indicate if a patient has NPDR – microaneurysms, intraretinal haemorrhages and/or retinal hypoperfusion. Indicate if a patient has PDR – neovascularisation - new retinal blood vessels. Indicate if a patient has Maculopathy - leakage of vessels close to the centre of the macula leading to macular oedema. 

Data Definition: Diagnosis date of Diabetic Retinopathy or Maculopathy

Data Definition: Indicate if neuropathy screening was completed for this visit.

Data Definition: Was screening for signs of psychological distress and/or symptoms of common mental health disorders performed at this visit?  

Data Definition: Date of screening for signs of psychological distress and/or symptoms of common mental health disorders performed at this visit  

Data Definition:

Data Definition: List all diagnosed mental health conditions. Can be self-reported or reported by a diagnostic physician.

Data Definition: Other mental health diagnosis

Data Definition: What actions were taken based on the screening results (check all that apply)?  

Data Definition: Other actions

Data Definition: Is patient currently receiving mental health services?

Data Definition: Describes the difficulty in accessing or rationing medications and/or diabetes supplies (e.g. needles, insulin, pump, rtCGM, etc.)

Data Definition: Basic needs can include one or more of the following: housing, food, utility bills, transportation, internet & phone, clothing.

Data Definition: Patient’s disability. Can be self reported or diagnosed by medical practitioner

Data Definition: Indicate patient's anti-gad status.

Data Definition: If available, indicate result date.

Data Definition: Indicate patient's anti-insulin status.

Data Definition: If available, enter result date

Data Definition: Indicate patient's anti-islet cell status.

Data Definition: If available, indicate date of anti-islet cell result.

Data Definition: If patient experienced HHS at diagnosis, indicate osmolality level in m0smol/kg.

Data Definition: Indicate patient's serum glucose level at diagnosis

Data Definition: Please list any other glucose lowering agent not listed above which the patient is taking

Data Definition: Number of hyperglycemia hyperosmolar syndrome (HHS) episodes since last visit

Data Definition: The average total daily basal insulin dose administered in the last 14 days.

Data Definition: The date on which the patient ceases to live