ID

40575

Description

Type 1 and Type 2 Diabetes in Adults DATA COLLECTION Version 1.0.0 Revised February 28th, 2019 www.ichom.org Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. Conditions: Type 1 Diabetes | Type 2 Diabetes Excluded Conditions: Diabetes mellitus types other than 1 and 2 | Secondary Diabetes | Gestational Diabetes Population: Adults Aged 18 years and Above Excluded Populations: Children and Young persons below 18 years Treatment Approaches: Non-Pharmacological Therapy | Non-Insulin-based Pharmacological Therapy | Insulin-based Pharmacological Therapy This form is for documentation of characteristics to be reported every 6 months by the patient. Maybe left out, if the questions were already answered in the Clinician-reported 6-monthly form. Use of the following Scores for this standard set: WHO (Five) Well-Being Index (WHO-5): The WHO-5 is free for all health care organizations, and a license is not needed. There are translations available. The total raw score, ranging from 0 to 25, is multiplied by 4 to give the final score, with 0 representing the worst imaginable well-being and 100 representing the best imaginable well-being. More information (including the WHO-5 Scoring Guide) may be found at www.who-5.org. Problem Areas in Diabetes Questionnaire (PAID): The PAID, authored by Joslin Diabetes Center (http://www.joslin.org), is the copyright of Joslin Diabetes Center (Copyright ©2000, Joslin Diabetes Center). The PAID, provided under license from Joslin Diabetes Center may not be copied, distributed or used in any way without the prior written consent of Joslin Diabetes Center. Contact Susan D. Sjostrom at Joslin Diabetes Center at: susan.sjostrom@joslin.harvard.edu for licensing details and scoring guide. Patient Health Questionnaire (PHQ-9): Copyright by Pfizer: "content found on the PHQ Screeners site is free for download and use as stated within the PHQ Screeners site", please visit http://www.phqscreeners.com/ for more information. For this standard set ICHOM was supported by Imperial College London Diabetes Centre and JDRF. Publication: Nano J, Carinci F, Okunade O, et al. A standard set of person-centred outcomes for diabetes mellitus: results of an international and unified approach. Diabetic Medicine [Internet]. [cited 2020 Mar 4];n/a(n/a). Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/dme.14286 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

www.ichom.org

Keywords

Versions (2)
  1. 5/17/19 5/17/19 - Sarah Riepenhausen
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

DOI

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License

Creative Commons BY-NC 4.0
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ICHOM Type 1 and Type 2 Diabetes in Adults

English

6-monthly Characteristics, Patient reported Form

1 forms  
Patient ID
Description

Patient ID

Alias
UMLS CUI-1
C1269815
Indicate the patient's medical record number.
Description

This item is not in the original standard set, but appears in the ones created before it. To be able to assign the separate forms to a specific patient (in case of multiple patients per site) it is included here as well. (This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution. INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution)

Data type

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
Description

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Clinician Reported Outcomes: Glycemic Control
Description

Clinician Reported Outcomes: Glycemic Control

Alias
UMLS CUI-1
C0184788
UMLS CUI-2
C0205210
UMLS CUI-3
C0700287
UMLS CUI-4
C3267174
Provide the percentage of time in the range of 70 mg/dL – 180 mg/dL (3.9-10.0 mmol/L) over the past 6 months
Description

INCLUSION CRITERIA: Only persons with diabetes on continuous glucose monitoring TIMING: Baseline, Every 6 months REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Numerical RESPONSE OPTIONS: Numerical value of time in range

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1,1]
C3267174
UMLS CUI [1,2]
C0040223
UMLS CUI [1,3]
C0086715
%
Clinician Reported Outcomes: Acute Events
Description

Clinician Reported Outcomes: Acute Events

Alias
UMLS CUI-1
C0184788
UMLS CUI-2
C0205210
UMLS CUI-3
C0700287
UMLS CUI-4
C0877248
In the past 6 months, how many episodes of severe hypoglycemia requiring assistance from another person did the person with diabetes experience (this includes assistance from clinical and non-clinical individuals)?
Description

Level 3 hypoglycemia is defined as a hypoglycemic event needing assistance INCLUSION CRITERIA: All patients TIMING: Baseline, Every 6 months REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0020615
UMLS CUI [1,2]
C4330815
UMLS CUI [1,3]
C0449788
In the past 6 months, how many episodes of level 2 hypoglycemia (Blood glucose below 54 mg/dl (3.0 mmol/L)) did the person with diabetes experience?
Description

Level 2 hypoglycemia is defined as a measurable glucose concentration <54 mg/dL (3.0 mmol/L) that needs immediate action INCLUSION CRITERIA: All patients TIMING: Baseline, Every 6 months REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Numerical

Data type

integer

Alias
UMLS CUI [1,1]
C0449788
UMLS CUI [1,2]
C0020615
UMLS CUI [1,3]
C3846732
Did any of these hypoglycemic episodes occur without symptoms?
Description

Level 2 hypoglycemia is defined as a measurable glucose concentration <54 mg/dL (3.0 mmol/L) that needs immediate action INCLUSION CRITERIA: If responded 1 or more to "In the past 6 months, how many episodes of level 2 hypoglycemia (Blood glucose below 54 mg/dl (3.0 mmol/L)) did the person with diabetes experience?" TIMING: Baseline, Every 6 months REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0020615
UMLS CUI [1,2]
C3846732
UMLS CUI [1,3]
C0342317
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Similar models

6-monthly Characteristics, Patient reported Form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Patient ID
C1269815 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number.
integer
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Clinician Reported Outcomes: Glycemic Control
C0184788 (UMLS CUI-1)
C0205210 (UMLS CUI-2)
C0700287 (UMLS CUI-3)
C3267174 (UMLS CUI-4)
Glycemic Control: Time in range
Item
Provide the percentage of time in the range of 70 mg/dL – 180 mg/dL (3.9-10.0 mmol/L) over the past 6 months
float
C3267174 (UMLS CUI [1,1])
C0040223 (UMLS CUI [1,2])
C0086715 (UMLS CUI [1,3])
Item Group
Clinician Reported Outcomes: Acute Events
C0184788 (UMLS CUI-1)
C0205210 (UMLS CUI-2)
C0700287 (UMLS CUI-3)
C0877248 (UMLS CUI-4)
Item
In the past 6 months, how many episodes of severe hypoglycemia requiring assistance from another person did the person with diabetes experience (this includes assistance from clinical and non-clinical individuals)?
integer
C0020615 (UMLS CUI [1,1])
C4330815 (UMLS CUI [1,2])
C0449788 (UMLS CUI [1,3])
Hypoglycemia - Level 3
Code List
In the past 6 months, how many episodes of severe hypoglycemia requiring assistance from another person did the person with diabetes experience (this includes assistance from clinical and non-clinical individuals)?
CL Item
0 (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
1 (1)
C0585347 (UMLS CUI-1)
(Comment:en)
CL Item
2 (2)
C1948050 (UMLS CUI-1)
(Comment:en)
CL Item
more than 2 (3)
C0439093 (UMLS CUI-1)
C1948050 (UMLS CUI-2)
(Comment:en)
CL Item
Unknown (99)
C0439673 (UMLS CUI-1)
(Comment:en)
Hypoglycemia - Level 2
Item
In the past 6 months, how many episodes of level 2 hypoglycemia (Blood glucose below 54 mg/dl (3.0 mmol/L)) did the person with diabetes experience?
integer
C0449788 (UMLS CUI [1,1])
C0020615 (UMLS CUI [1,2])
C3846732 (UMLS CUI [1,3])
Item
Did any of these hypoglycemic episodes occur without symptoms?
integer
C0020615 (UMLS CUI [1,1])
C3846732 (UMLS CUI [1,2])
C0342317 (UMLS CUI [1,3])
Statin/Lipid Lowering Therapy
Code List
Did any of these hypoglycemic episodes occur without symptoms?
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (9)
C0439673 (UMLS CUI-1)
(Comment:en)
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
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