ID

40617

Beschrijving

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/ 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. 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 Follow-up - Patient-reported form. It has to be filled in annually from baseline. 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). For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Trefwoorden

Versies (2)
  1. 30-07-19 30-07-19 -
  2. 30-04-20 30-04-20 - Sarah Riepenhausen
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ICHOM

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30 april 2020

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Creative Commons BY-NC 4.0
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ICHOM Macular Degeneration

Engels

Follow-up - Patient-reported

1 Formulieren  
Administrative Data
Beschrijving

Administrative Data

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

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

Datatype

integer

Alias
UMLS CUI [1]
C2348585
Time Relative to Baseline
Beschrijving

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_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Datatype

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Visual functioning and health related quality of life
Beschrijving

Visual functioning and health related quality of life

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

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

Datatype

integer

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

Follow-up - Patient-reported

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C2348585 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
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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