ID

44352

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 annually by the patient. If necessary (i.e. information not already on the 6-monthly clinician-reported form) please also fill in the 6-monthly patient-reported form. It is sufficient for the educational status to only be updated every 5 years. 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

  1. 5/17/19 5/17/19 - Sarah Riepenhausen
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
  3. 9/20/21 9/20/21 -
Copyright Holder

ICHOM

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September 20, 2021

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Creative Commons BY-NC 4.0

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ICHOM Type 1 and Type 2 Diabetes in Adults

Annual Characteristics, Patient reported Form

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
Demographic Factors
Description

Demographic Factors

Alias
UMLS CUI-1
C1704791
Please indicate the highest level of education attained
Description

The categories below map to the International Standard Classification of Education (ISCED) (http://uis.unesco.org/en/topic/international-standard-classification-education-isced) as follows: None= Early childhood education, Primary education Primary= Lower secondary education, Upper secondary education Secondary= Post-secondary non-tertiary education, Short-cycle tertiary education Tertiary= Bachelor's or equivalent level, Master's or equivalent level, Doctoral or equivalent level INCLUSION CRITERIA: All Patients TIMING: Baseline, Every 5 years REPORTING SOURCE: Patient Type: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0013658
Lifestyle and Social Factors
Description

Lifestyle and Social Factors

Alias
UMLS CUI-1
C0023676
UMLS CUI-2
C0337460
What is your smoking status today?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1519384
How often do you consume alcoholic drinks or beverages? Please provide an estimated average frequency over the past year.
Description

For international benchmarking work, the amount of alcohol consumed by each patient should be converted by multiplying ALCFREQ x ALCAMT x country- or region-specific number of grams per unit of alcohol INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0001948
UMLS CUI [1,2]
C0439603
On average, how many units of alcohol do you consume when you drink alcoholic drinks or beverages? Please provide an estimated average of the amount you consumed each time you consumed alcohol over the past year.
Description

Patient will be provided with local or country-specific guidance on what constitutes a unit of alcohol For international benchmarking work, the amount of alcohol consumed by each patient should be converted by multiplying ALCFREQ x ALCAMT x country- or region-specific number of grams per unit of alcohol INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Numerical RESPONSE OPTIONS: Average number of units consumed in whole numbers

Data type

float

Measurement units
  • units
Alias
UMLS CUI [1,1]
C0001948
UMLS CUI [1,2]
C1265611
units
On average, have you been physically active over the past year? This means being active for more than 150 minutes of moderate intensity exercise or 75 minutes of vigorous exercise a week.
Description

Being active is defined in accordance with the World Health Organization (WHO) guidelines as engaging in at least 150 minutes of moderate physical activity a week or 75 minutes of vigorous activity a week (http://www.who.int/dietphysicalactivity/publications/recommendations18_64yearsold/en/). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0026606
Do you have a physical disability that is preventing you from being more active?
Description

INCLUSION CRITERIA: If responded "No" to "Are you physically active?" TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0516981
UMLS CUI [2]
C0231170
Whom do you currently live with?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0037438
UMLS CUI [2]
C2184149
Treatment variables
Description

Treatment variables

Alias
UMLS CUI-1
C0087111
Please rate how well you stick to the dietary advice from your healthcare team on a scale from 1 to 10 1 = not adherent 10 = fully adherent
Description

This scale was developed by the Diabetes Working Group and has not yet been validated INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Numerical RESPONSE OPTIONS: Integer response between 1 and 10, 0 = not rated

Data type

integer

Alias
UMLS CUI [1,1]
C1321605
UMLS CUI [1,2]
C0562216
Please rate how well you stick to advice on exercise from your healthcare team on a scale from 1 to 10 1 = not adherent 10 = fully adherent
Description

This scale was developed by the Diabetes Working Group and has not yet been validated INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Numerical RESPONSE OPTIONS: Integer response between 1 and 10, 0 = not rated

Data type

integer

Alias
UMLS CUI [1,1]
C1321605
UMLS CUI [1,2]
C0375886
Please rate how well you stick to the advice on monitoring your blood sugar from your healthcare team on a scale from 1 to 10 1 = not adherent 10 = fully adherent
Description

This scale was developed by the Diabetes Working Group and has not yet been validated INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Numerical RESPONSE OPTIONS: Integer response between 1 and 10, 0 = not rated

Data type

integer

Alias
UMLS CUI [1,1]
C3825243
UMLS CUI [1,2]
C1321605
Please rate how well you stick to your prescribed medication and/or insulin regimen on a scale from 1 to 10 1 = not adherent 10 = fully adherent
Description

This scale was developed by the Diabetes Working Group and has not yet been validated INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Numerical RESPONSE OPTIONS: Integer response between 1 and 10, 0 = not rated

Data type

integer

Alias
UMLS CUI [1,1]
C1321605
UMLS CUI [1,2]
C0013216
Clinician-reported Outcomes: Chronic Complications
Description

Clinician-reported Outcomes: Chronic Complications

Alias
UMLS CUI-1
C0184788
UMLS CUI-2
C0205210
UMLS CUI-3
C0700287
UMLS CUI-4
C0342257
UMLS CUI-5
C0008679
Does the person with diabetes experience visual impairment?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0342257
UMLS CUI [1,2]
C0443258
UMLS CUI [1,3]
C2609253
UMLS CUI [2]
C3665347
What symptoms are you experiencing due to your peripheral neuropathy (nerve damage to your lower or upper limbs)?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0342257
UMLS CUI [1,2]
C0443258
UMLS CUI [1,3]
C2609253
UMLS CUI [2,1]
C0031117
UMLS CUI [2,2]
C1457887
Does the person with diabetes experience symptoms of peripheral artery disease?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0342257
UMLS CUI [1,2]
C0443258
UMLS CUI [1,3]
C2609253
UMLS CUI [2,1]
C1704436
UMLS CUI [2,2]
C1457887
Does the person with diabetes experience erectile dysfunction?
Description

When presenting this question at annual follow-up, phrase as follows: "In the past 12 months, did the person with diabetes experience any erectile dysfunction? INCLUSION CRITERIA: Only male patients TIMING: Baseline, Annually REPORTING SOURCE: Clinician /Healthcare provider or Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0342257
UMLS CUI [1,2]
C0443258
UMLS CUI [1,3]
C2609253
UMLS CUI [2]
C0242350
Patient reported Outcomes: Financial Barriers to Care
Description

Patient reported Outcomes: Financial Barriers to Care

Alias
UMLS CUI-1
C2987124
UMLS CUI-2
C0549106
UMLS CUI-3
C0086388
Do you have difficulty getting to see the healthcare professionals you need for your diabetes when you need to?
Description

All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0444454
UMLS CUI [1,2]
C0086388
UMLS CUI [2,1]
C0444454
UMLS CUI [2,2]
C1704312
What are the reasons for this? - Transportation problems
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0444454
UMLS CUI [1,2]
C0332268
UMLS CUI [1,3]
C1704312
UMLS CUI [1,4]
C0566251
UMLS CUI [2,1]
C0033213
UMLS CUI [2,2]
C0040756
What are the reasons for this? - Difficulty paying for it
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0444454
UMLS CUI [1,2]
C0332268
UMLS CUI [1,3]
C1704312
UMLS CUI [1,4]
C0566251
UMLS CUI [2]
C0549106
What are the reasons for this? - Not available where I live
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0444454
UMLS CUI [1,2]
C0332268
UMLS CUI [1,3]
C1704312
UMLS CUI [1,4]
C0566251
UMLS CUI [2,1]
C0686905
UMLS CUI [2,2]
C1704312
What are the reasons for this? - Other reason
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0444454
UMLS CUI [1,2]
C0332268
UMLS CUI [1,3]
C1704312
UMLS CUI [1,4]
C0566251
UMLS CUI [2]
C3840932
What are the reasons for this? - Unknown
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0444454
UMLS CUI [1,2]
C0332268
UMLS CUI [1,3]
C1704312
UMLS CUI [1,4]
C0566251
UMLS CUI [1,5]
C0439673
Do you have difficulty obtaining the medicine or supplies you need to manage your diabetes well?
Description

All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Single answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0444454
UMLS CUI [1,2]
C0086388
UMLS CUI [2,1]
C0444454
UMLS CUI [2,2]
C0013227
UMLS CUI [3,1]
C0444454
UMLS CUI [3,2]
C2065806
What are the reasons for this? - Transportation problems
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0332268
UMLS CUI [1,2]
C0444454
UMLS CUI [1,3]
C0013227
UMLS CUI [1,4]
C0566251
UMLS CUI [2,1]
C0332268
UMLS CUI [2,2]
C0444454
UMLS CUI [2,3]
C2065806
UMLS CUI [2,4]
C0566251
UMLS CUI [3,1]
C0033213
UMLS CUI [3,2]
C0040756
What are the reasons for this? - Difficulty paying for it
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0332268
UMLS CUI [1,2]
C0444454
UMLS CUI [1,3]
C0013227
UMLS CUI [1,4]
C0566251
UMLS CUI [2,1]
C0332268
UMLS CUI [2,2]
C0444454
UMLS CUI [2,3]
C2065806
UMLS CUI [2,4]
C0566251
UMLS CUI [3]
C0549106
What are the reasons for this? - Not available where I live
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0332268
UMLS CUI [1,2]
C0444454
UMLS CUI [1,3]
C0013227
UMLS CUI [1,4]
C0566251
UMLS CUI [2,1]
C0332268
UMLS CUI [2,2]
C0444454
UMLS CUI [2,3]
C2065806
UMLS CUI [2,4]
C0566251
UMLS CUI [3,1]
C0686905
UMLS CUI [3,2]
C1704312
What are the reasons for this? - Other reason
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0332268
UMLS CUI [1,2]
C0444454
UMLS CUI [1,3]
C0013227
UMLS CUI [1,4]
C0566251
UMLS CUI [2,1]
C0332268
UMLS CUI [2,2]
C0444454
UMLS CUI [2,3]
C2065806
UMLS CUI [2,4]
C0566251
UMLS CUI [3]
C3840932
What are the reasons for this? - Unknown
Description

If a person responds "difficulty paying for it" as a reason for having difficulty accessing medicines or supplies, then this will be counted as an outcome. This will only apply to the responses after the baseline response. All responses to the Access to care questions (ACCESPROF, ACCESPROFREAS, ACCESMED, ACCESMEDREAS) should be measured at baseline and included as case-mix variables in the analysis. These questions should be repeated annually and the presence or absence of financial barriers used as an outcome (i.e. whether or not the patient selects “Difficulty paying for it” as a response option to ACCESMEDREAS and ACCESPROFREAS). INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: Multiple answer (Here as multiple boolean questions)

Data type

boolean

Alias
UMLS CUI [1,1]
C0332268
UMLS CUI [1,2]
C0444454
UMLS CUI [1,3]
C0013227
UMLS CUI [1,4]
C0566251
UMLS CUI [1,5]
C0439673
UMLS CUI [2,1]
C0332268
UMLS CUI [2,2]
C0444454
UMLS CUI [2,3]
C2065806
UMLS CUI [2,4]
C0566251
UMLS CUI [2,5]
C0439673
Patient reported Outcome: Psychological Well-being
Description

Patient reported Outcome: Psychological Well-being

Alias
UMLS CUI-1
C2987124
UMLS CUI-2
C0424578
Psychological Wellbeing
Description

Measured using the 5-item WHO (Five) Well-Being Index INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: As per tool developer RESPONSE OPTIONS: The WHO-5 is free for all health care organizations, and a license is not needed. There are translations available. More information may be found at www.who-5.org.

Data type

integer

Alias
UMLS CUI [1,1]
C0424578
UMLS CUI [1,2]
C0449820
UMLS CUI [2,1]
C3813622
UMLS CUI [2,2]
C0449820
Patient-Reported Outcomes: Diabetes Distress
Description

Patient-Reported Outcomes: Diabetes Distress

Alias
UMLS CUI-1
C2987124
UMLS CUI-2
C0011849
UMLS CUI-3
C0231303
Diabetes Distress
Description

Measured using the 20-item Problem Areas in Diabetes questionnaire INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: As per tool developer RESPONSE OPTIONS: 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.

Data type

text

Alias
UMLS CUI [1,1]
C0011849
UMLS CUI [1,2]
C0231303
UMLS CUI [1,3]
C0449820
Patient-reported outcomes: Depression
Description

Patient-reported outcomes: Depression

Alias
UMLS CUI-1
C2987124
UMLS CUI-2
C0011581
Depression
Description

Measured using the 9-item PHQ-9 questionnaire INCLUSION CRITERIA: All patients TIMING: Baseline, Annually REPORTING SOURCE: Patient TYPE: As per tool developer RESPONSE OPTIONS: The PHQ-9 is free for all health care organizations, and a license is not needed. There are translations available. More information may be found at https://www.phqscreeners.com.

Data type

text

Alias
UMLS CUI [1,1]
C0011581
UMLS CUI [1,2]
C3828565

Similar models

Annual Characteristics, Patient reported Form

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
Demographic Factors
C1704791 (UMLS CUI-1)
Item
Please indicate the highest level of education attained
integer
C0013658 (UMLS CUI [1])
Code List
Please indicate the highest level of education attained
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0033145 (UMLS CUI-1)
(Comment:en)
CL Item
Secondary (2)
C0036530 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Item Group
Lifestyle and Social Factors
C0023676 (UMLS CUI-1)
C0337460 (UMLS CUI-2)
Item
What is your smoking status today?
integer
C1519384 (UMLS CUI [1])
Code List
What is your smoking status today?
CL Item
Current smoker (1)
C3241966 (UMLS CUI-1)
(Comment:en)
CL Item
Never smoker (0)
C0425293 (UMLS CUI-1)
(Comment:en)
CL Item
Ex-smoker quit smoking less than 5 years ago (2)
C0337671 (UMLS CUI-1)
C1298908 (UMLS CUI-2)
C3843291 (UMLS CUI-3)
(Comment:en)
CL Item
Ex-smoker quit smoking 5 years ago or longer (3)
C0337671 (UMLS CUI-1)
C3843291 (UMLS CUI-2)
(Comment:en)
Item
How often do you consume alcoholic drinks or beverages? Please provide an estimated average frequency over the past year.
integer
C0001948 (UMLS CUI [1,1])
C0439603 (UMLS CUI [1,2])
Code List
How often do you consume alcoholic drinks or beverages? Please provide an estimated average frequency over the past year.
CL Item
Every day/7 days per week (5)
C0332173 (UMLS CUI-1)
(Comment:en)
CL Item
5 to 6 days per week (4)
C3844180 (UMLS CUI-1)
(Comment:en)
CL Item
3 to 4 days per week (3)
C3844181 (UMLS CUI-1)
(Comment:en)
CL Item
1 to 2 days per week (2)
C3844183 (UMLS CUI-1)
(Comment:en)
CL Item
1 to 3 days per month (1)
C3844154 (UMLS CUI-1)
(Comment:en)
CL Item
Never (0)
C2003901 (UMLS CUI-1)
(Comment:en)
Alcohol Amount
Item
On average, how many units of alcohol do you consume when you drink alcoholic drinks or beverages? Please provide an estimated average of the amount you consumed each time you consumed alcohol over the past year.
float
C0001948 (UMLS CUI [1,1])
C1265611 (UMLS CUI [1,2])
Item
On average, have you been physically active over the past year? This means being active for more than 150 minutes of moderate intensity exercise or 75 minutes of vigorous exercise a week.
integer
C0026606 (UMLS CUI [1])
Code List
On average, have you been physically active over the past year? This means being active for more than 150 minutes of moderate intensity exercise or 75 minutes of vigorous exercise a week.
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)
Item
Do you have a physical disability that is preventing you from being more active?
integer
C0516981 (UMLS CUI [1])
C0231170 (UMLS CUI [2])
Code List
Do you have a physical disability that is preventing you from being more active?
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)
Item
Whom do you currently live with?
integer
C0037438 (UMLS CUI [1])
C2184149 (UMLS CUI [2])
Code List
Whom do you currently live with?
CL Item
I live with partner/spouse/family/friends (1)
C1443355 (UMLS CUI-1)
C2184147 (UMLS CUI-2)
C0557130 (UMLS CUI-3)
C0557128 (UMLS CUI-4)
(Comment:en)
CL Item
I live alone (2)
C0439044 (UMLS CUI-1)
(Comment:en)
CL Item
I live in a nursing home, hospital or other long-term care home (3)
C0425205 (UMLS CUI-1)
C0557218 (UMLS CUI-2)
C3640869 (UMLS CUI-3)
(Comment:en)
CL Item
Other  (88)
C0205394 (UMLS CUI-1)
C2184149 (UMLS CUI-2)
(Comment:en)
CL Item
Unknown (99)
C2184149 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
(Comment:en)
Item Group
Treatment variables
C0087111 (UMLS CUI-1)
Treatment Adherence (Dietary advice)
Item
Please rate how well you stick to the dietary advice from your healthcare team on a scale from 1 to 10 1 = not adherent 10 = fully adherent
integer
C1321605 (UMLS CUI [1,1])
C0562216 (UMLS CUI [1,2])
Treatment Adherence (Exercise)
Item
Please rate how well you stick to advice on exercise from your healthcare team on a scale from 1 to 10 1 = not adherent 10 = fully adherent
integer
C1321605 (UMLS CUI [1,1])
C0375886 (UMLS CUI [1,2])
Treatment Adherence (Blood sugar monitoring)
Item
Please rate how well you stick to the advice on monitoring your blood sugar from your healthcare team on a scale from 1 to 10 1 = not adherent 10 = fully adherent
integer
C3825243 (UMLS CUI [1,1])
C1321605 (UMLS CUI [1,2])
Treatment Adherence (Medication adherence)
Item
Please rate how well you stick to your prescribed medication and/or insulin regimen on a scale from 1 to 10 1 = not adherent 10 = fully adherent
integer
C1321605 (UMLS CUI [1,1])
C0013216 (UMLS CUI [1,2])
Item Group
Clinician-reported Outcomes: Chronic Complications
C0184788 (UMLS CUI-1)
C0205210 (UMLS CUI-2)
C0700287 (UMLS CUI-3)
C0342257 (UMLS CUI-4)
C0008679 (UMLS CUI-5)
Item
Does the person with diabetes experience visual impairment?
integer
C0342257 (UMLS CUI [1,1])
C0443258 (UMLS CUI [1,2])
C2609253 (UMLS CUI [1,3])
C3665347 (UMLS CUI [2])
Code List
Does the person with diabetes experience visual impairment?
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)
Item
What symptoms are you experiencing due to your peripheral neuropathy (nerve damage to your lower or upper limbs)?
integer
C0342257 (UMLS CUI [1,1])
C0443258 (UMLS CUI [1,2])
C2609253 (UMLS CUI [1,3])
C0031117 (UMLS CUI [2,1])
C1457887 (UMLS CUI [2,2])
Code List
What symptoms are you experiencing due to your peripheral neuropathy (nerve damage to your lower or upper limbs)?
CL Item
Numbness (1)
C0028643 (UMLS CUI-1)
(Comment:en)
CL Item
Pain (2)
C0030193 (UMLS CUI-1)
(Comment:en)
CL Item
Paresthesia (3)
C0030554 (UMLS CUI-1)
(Comment:en)
CL Item
Asymptomatic/ No symptoms (0)
C0231221 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (99)
C0439673 (UMLS CUI-1)
C1457887 (UMLS CUI-2)
(Comment:en)
Item
Does the person with diabetes experience symptoms of peripheral artery disease?
integer
C0342257 (UMLS CUI [1,1])
C0443258 (UMLS CUI [1,2])
C2609253 (UMLS CUI [1,3])
C1704436 (UMLS CUI [2,1])
C1457887 (UMLS CUI [2,2])
Code List
Does the person with diabetes experience symptoms of peripheral artery disease?
CL Item
Yes, intermittent claudication (1)
C0021775 (UMLS CUI-1)
(Comment:en)
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes, rest pain (2)
C0234253 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (99)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Does the person with diabetes experience erectile dysfunction?
integer
C0342257 (UMLS CUI [1,1])
C0443258 (UMLS CUI [1,2])
C2609253 (UMLS CUI [1,3])
C0242350 (UMLS CUI [2])
Code List
Does the person with diabetes experience erectile dysfunction?
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)
Item Group
Patient reported Outcomes: Financial Barriers to Care
C2987124 (UMLS CUI-1)
C0549106 (UMLS CUI-2)
C0086388 (UMLS CUI-3)
Item
Do you have difficulty getting to see the healthcare professionals you need for your diabetes when you need to?
integer
C0444454 (UMLS CUI [1,1])
C0086388 (UMLS CUI [1,2])
C0444454 (UMLS CUI [2,1])
C1704312 (UMLS CUI [2,2])
Code List
Do you have difficulty getting to see the healthcare professionals you need for your diabetes when you need to?
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)
Access to healthcare professionals (Reasons for lack of access) - Transportation problems
Item
What are the reasons for this? - Transportation problems
boolean
C0444454 (UMLS CUI [1,1])
C0332268 (UMLS CUI [1,2])
C1704312 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0033213 (UMLS CUI [2,1])
C0040756 (UMLS CUI [2,2])
Access to healthcare professionals (Reasons for lack of access) - Difficulty paying for it
Item
What are the reasons for this? - Difficulty paying for it
boolean
C0444454 (UMLS CUI [1,1])
C0332268 (UMLS CUI [1,2])
C1704312 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0549106 (UMLS CUI [2])
Access to healthcare professionals (Reasons for lack of access) - Not available where I live
Item
What are the reasons for this? - Not available where I live
boolean
C0444454 (UMLS CUI [1,1])
C0332268 (UMLS CUI [1,2])
C1704312 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0686905 (UMLS CUI [2,1])
C1704312 (UMLS CUI [2,2])
Access to healthcare professionals (Reasons for lack of access) - Other reason
Item
What are the reasons for this? - Other reason
boolean
C0444454 (UMLS CUI [1,1])
C0332268 (UMLS CUI [1,2])
C1704312 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C3840932 (UMLS CUI [2])
Access to healthcare professionals (Reasons for lack of access) - Unknown
Item
What are the reasons for this? - Unknown
boolean
C0444454 (UMLS CUI [1,1])
C0332268 (UMLS CUI [1,2])
C1704312 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0439673 (UMLS CUI [1,5])
Access to healthcare (Access to medicines and supplies)
Item
Do you have difficulty obtaining the medicine or supplies you need to manage your diabetes well?
boolean
C0444454 (UMLS CUI [1,1])
C0086388 (UMLS CUI [1,2])
C0444454 (UMLS CUI [2,1])
C0013227 (UMLS CUI [2,2])
C0444454 (UMLS CUI [3,1])
C2065806 (UMLS CUI [3,2])
Access to medicines and supplies (reasons for lack of access) - Transportation problems
Item
What are the reasons for this? - Transportation problems
boolean
C0332268 (UMLS CUI [1,1])
C0444454 (UMLS CUI [1,2])
C0013227 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0332268 (UMLS CUI [2,1])
C0444454 (UMLS CUI [2,2])
C2065806 (UMLS CUI [2,3])
C0566251 (UMLS CUI [2,4])
C0033213 (UMLS CUI [3,1])
C0040756 (UMLS CUI [3,2])
Access to medicines and supplies (reasons for lack of access) - Difficulty paying for it
Item
What are the reasons for this? - Difficulty paying for it
boolean
C0332268 (UMLS CUI [1,1])
C0444454 (UMLS CUI [1,2])
C0013227 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0332268 (UMLS CUI [2,1])
C0444454 (UMLS CUI [2,2])
C2065806 (UMLS CUI [2,3])
C0566251 (UMLS CUI [2,4])
C0549106 (UMLS CUI [3])
Access to medicines and supplies (reasons for lack of access) - Not available where I live
Item
What are the reasons for this? - Not available where I live
boolean
C0332268 (UMLS CUI [1,1])
C0444454 (UMLS CUI [1,2])
C0013227 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0332268 (UMLS CUI [2,1])
C0444454 (UMLS CUI [2,2])
C2065806 (UMLS CUI [2,3])
C0566251 (UMLS CUI [2,4])
C0686905 (UMLS CUI [3,1])
C1704312 (UMLS CUI [3,2])
Access to medicines and supplies (reasons for lack of access) - Other reason
Item
What are the reasons for this? - Other reason
boolean
C0332268 (UMLS CUI [1,1])
C0444454 (UMLS CUI [1,2])
C0013227 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0332268 (UMLS CUI [2,1])
C0444454 (UMLS CUI [2,2])
C2065806 (UMLS CUI [2,3])
C0566251 (UMLS CUI [2,4])
C3840932 (UMLS CUI [3])
Access to medicines and supplies (reasons for lack of access) - Unknown
Item
What are the reasons for this? - Unknown
boolean
C0332268 (UMLS CUI [1,1])
C0444454 (UMLS CUI [1,2])
C0013227 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,4])
C0439673 (UMLS CUI [1,5])
C0332268 (UMLS CUI [2,1])
C0444454 (UMLS CUI [2,2])
C2065806 (UMLS CUI [2,3])
C0566251 (UMLS CUI [2,4])
C0439673 (UMLS CUI [2,5])
Item Group
Patient reported Outcome: Psychological Well-being
C2987124 (UMLS CUI-1)
C0424578 (UMLS CUI-2)
WHO-5 Well-Being Index
Item
Psychological Wellbeing
integer
C0424578 (UMLS CUI [1,1])
C0449820 (UMLS CUI [1,2])
C3813622 (UMLS CUI [2,1])
C0449820 (UMLS CUI [2,2])
Item Group
Patient-Reported Outcomes: Diabetes Distress
C2987124 (UMLS CUI-1)
C0011849 (UMLS CUI-2)
C0231303 (UMLS CUI-3)
PAID Diabetes Distress Score
Item
Diabetes Distress
text
C0011849 (UMLS CUI [1,1])
C0231303 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Item Group
Patient-reported outcomes: Depression
C2987124 (UMLS CUI-1)
C0011581 (UMLS CUI-2)
PHQ-9 Depression Score
Item
Depression
text
C0011581 (UMLS CUI [1,1])
C3828565 (UMLS CUI [1,2])

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