ID

37459

Description

ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Macular Degeneration, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Neovascular Macular Degeneration Neovascular Age Related Macular Degeneration | Polypoidal Choroidal Vasculopathy | Myopic Neovascular Macular Degeneration | Other Forms of Neovascular Macular Degeneration (includes Post-Traumatic, Inflammatory, Idiopathic, Macular Telangiectasia Type 2) Non-Neovascular Age Related Macular Degeneration Treatment approaches: Intravitreal anti-VEGF treatment | Other intravitreal treatment | Photodynamic therapy | Thermal laser photocoagulation | Retinal radiation therapy | Transpupillary thermotherapy | Retinal surgical treatment This document contains the Baseline - Patient-reported form. It has to be filled in at Patient's entrance into outcome tracking system for Macular Degeneration. Collecting Patient-Reported Outcome Measure: Brief Impact of Vision Impairment Questionnaire (Brief IVI): The Brief IVI includes costs for commercial use, and requires an agreement license. Therefore this questionnaire is not included in this Version of the standard set. Reference: Rodrigues IA, Sprinkhuizen SM, Barthelmes D, et al. Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration. American Journal of Opthalmology. 2016;168:1–12. doi: 10.1016/j.ajo.2016.04.012 The Standard set of ICHOM was supported by the WillsEye Hospital (America’s First World’s Best), Retina Suisse, St. Erik Eye Hospital, Macular Society, The Retina Society, Save sight Institute and The Macula Foundation (Preserving and Restoring Vision).

Link

http://www.ichom.org/

Keywords

  1. 7/24/19 7/24/19 -
  2. 7/30/19 7/30/19 -
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

July 30, 2019

DOI

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License

Creative Commons BY-NC 3.0

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ICHOM Macular Degeneration

Baseline - Patient-reported

Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Description

SUPPORTING DEFINITION: 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]
C2348585
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
What is your ethnicity?
Description

Note that regulations on reporting ethnicity may differ per country INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Patient-reported

Data type

integer

Alias
UMLS CUI [1]
C0015031
Do you smoke?
Description

Smoking status (of cigarettes, cigars or tobacco) INCLUSION CRITERIA: ALl patients TIMING: Baseline REPORTING SOURCE: Patient-reported

Data type

integer

Alias
UMLS CUI [1]
C1519386
Visual functioning and health related quality of life
Description

Visual functioning and health related quality of life

Alias
UMLS CUI-1
C4279947
UMLS CUI-2
C0042792
Brief IVI questionnaire, total score
Description

As there is a license for use of this questionnaire, the actual questions are not part of this verison of the standard set. In the original standard set the Brief IVI questionnaire includes 15 questions. The ICHOM OID's are: B_IVI_Q01 to B_IVI_Q15 INCLUSION CRITERIA: All patients TIMING: Baseline, 1 year post initiation of treatment and tracked ongoing annually while under follow-up REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C3665347
UMLS CUI [1,2]
C0034394
UMLS CUI [1,3]
C2964552

Similar models

Baseline - Patient-reported

Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C2348585 (UMLS CUI [1])
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
Item
What is your ethnicity?
integer
C0015031 (UMLS CUI [1])
Code List
What is your ethnicity?
CL Item
Asian  (1)
C0078988 (UMLS CUI-1)
(Comment:en)
CL Item
Black (2)
C0005680 (UMLS CUI-1)
(Comment:en)
CL Item
Hispanic  (3)
C0086409 (UMLS CUI-1)
(Comment:en)
CL Item
White (4)
C0007457 (UMLS CUI-1)
(Comment:en)
CL Item
Mixed/multiple ethnic origins  (5)
C0015031 (UMLS CUI-1)
C0205430 (UMLS CUI-2)
(Comment:en)
CL Item
Other (888)
C0205394 (UMLS CUI-1)
(Comment:en)
Item
Do you smoke?
integer
C1519386 (UMLS CUI [1])
Code List
Do you smoke?
CL Item
Current smoker (1)
C3241966 (UMLS CUI-1)
(Comment:en)
CL Item
Former smoker (2)
C0337671 (UMLS CUI-1)
(Comment:en)
CL Item
Never smoked (3)
C3472670 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown/Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item Group
Visual functioning and health related quality of life
C4279947 (UMLS CUI-1)
C0042792 (UMLS CUI-2)
Brief IVI questionnaire, total score
Item
Brief IVI questionnaire, total score
integer
C3665347 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])

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