ID

40634

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/ 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 Each Clinical Visit - Clinical Form. 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.

Lien

http://www.ichom.org/

Mots-clés

Versions (6)
  1. 25/07/2019 25/07/2019 -
  2. 30/07/2019 30/07/2019 -
  3. 30/07/2019 30/07/2019 -
  4. 02/08/2019 02/08/2019 - Sarah Riepenhausen
  5. 30/04/2020 30/04/2020 - Sarah Riepenhausen
  6. 30/04/2020 30/04/2020 - Sarah Riepenhausen
Détendeur de droits

ICHOM

Téléchargé le

30 avril 2020

DOI

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Creative Commons BY-NC 4.0
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ICHOM Macular Degeneration

Anglais

Follow-up, 1+2 years post treatment - Patient-reported

1 Formulaires  
Administrative Data
Description

Administrative Data

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

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

Type de données

integer

Alias
UMLS CUI [1]
C1269815
Patient's last name:
Description

The patients' name will not be shared with ICHOM.  INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical

Type de données

text

Alias
UMLS CUI [1]
C1299487
Time Relative to Baseline
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_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Type de données

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Treatment variables
Description

Treatment variables

Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 0 = No
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1,1]
C1298908
UMLS CUI [1,2]
C0543467
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 1 = Breast reconstruction surgery
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0085076
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 2 = Mastectomy
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0024881
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 3 = Axillary dissection
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0193867
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 999 = Unknown
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C0439673
If yes, when did you have your re-operation?
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Date by DD/MM/YYYY; Please enter "999" if date is unknown

Type de données

date

Unités de mesure
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C1624150
DD/MM/YYYY
Are you currently receiving systemic (ie drug) treatment for breast cancer? 0=no, never had systemic treatment
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1,1]
C1515119
UMLS CUI [1,2]
C2003901
Are you currently receiving systemic (ie drug) treatment for breast cancer? 1=yes, but the treatment has stopped
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C1515119
UMLS CUI [2,1]
C0013227
UMLS CUI [2,2]
C2746065
Are you currently receiving systemic (ie drug) treatment for breast cancer? 2=yes, on chemotherapy
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C1515119
UMLS CUI [2]
C0392920
Are you currently receiving systemic (ie drug) treatment for breast cancer? 3=yes, on targeted therapy
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C1515119
UMLS CUI [2]
C2985566
Are you currently receiving systemic (ie drug) treatment for breast cancer? 4= yes, on hormone therapy
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C1515119
UMLS CUI [2]
C0279025
Are you currently receiving systemic (ie drug) treatment for breast cancer? 999=unkown
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Multiple answer Separate multiple entries with "";""

Type de données

boolean

Alias
UMLS CUI [1]
C1515119
UMLS CUI [2]
C0439673
If the treatment has stopped, when did you stop your treatment?
Description

INCLUSION CRITERIA: All patients TIMING: 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Date by DD/MM/YYYY; Please enter "999" if date is unknown

Type de données

date

Unités de mesure
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C1515119
UMLS CUI [1,2]
C3173309
DD/MM/YYYY
Degree of health
Description

Degree of health

EORTC QLQ-C30, total score
Description

As a permission is needed for use of this questionnaire, the actual 30 questions are not part of this version of the standard set. Instead you can note the total score. The ICHOM OID's are: EORTC QLQ-C30_Q01 to EORTC QLQ-C30_Q30. INCLUSION CRITERIA: All patients TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C4055104
UMLS CUI [1,2]
C2964552
EORTC QLQ-BR23, total score
Description

As a permission is needed for use of this questionnaire, the actual 23 questions are not part of this version of the standard set. Instead you can note the total score. The ICHOM OID's are: EORTCQLQBR23_Q31 to EORTCQLQBR23_Q53. INCLUSION CRITERIA: All patients TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C4724921
UMLS CUI [1,2]
C0451149
UMLS CUI [1,3]
C2964552
BREAST-Q Mastectomy, total score
Description

As a license is needed for use of this questionnaire, the actual 4 questions of BREAST-Q (to Mastectomy) are not part of this version of the standard set. Instead you can note the total score. The ICHOM OID's are: BREASTQMASTP_Q01 to BREASTQMASTP_Q04 INCLUSION CRITERIA: Patients with mastectomy TIMING: 1 and 2 year post treatment REPORTING SOURCE: Patient-reported TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C4683551
UMLS CUI [1,2]
C0024881
UMLS CUI [1,3]
C2964552
BREAST-Q Breast conserving therapy, total score
Description

As a license is needed for use of this questionnaire, the actual 11 questions of BREAST-Q (to Breast conserving therapy) are not part of this version of the standard set. Instead you can note the total score. The ICHOM OID's are: BREASTQBCTP_Q01 to BREASTQBCTP_Q11 INCLUSION CRITERIA: Patients with breast conserving therapy TIMING: 1 and 2 year post treatment REPORTING SOURCE: Patient-reported TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C4683551
UMLS CUI [1,2]
C0917927
UMLS CUI [1,3]
C2964552
BREAST-Q Reconstruction, total score
Description

As a license is needed for use of this questionnaire, the actual 16 questions of BREAST-Q (to Reconstruction) are not part of this version of the standard set. Instead you can note the total score. The ICHOM OID's are: BREASTQRECP_Q01 to BREASTQRECP_Q16 INCLUSION CRITERIA:Patients with reconstruction TIMING: 1 and 2 year post treatment REPORTING SOURCE: Patient-reported TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C4683551
UMLS CUI [1,2]
C0524865
UMLS CUI [1,3]
C2964552
Please indicate the extent to which you have experienced the following symptom during the past week. During the past week: 1. Have you had tingling hands or feet?
Description

European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-LMC21): A license is needed for use of this questionnaire as well, however only one question is used. The ICHOM OID's is: EORTC QLQ-LMC21 INCLUSION CRITERIA: All patients TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C0451149
UMLS CUI [1,2]
C2116350
UMLS CUI [1,3]
C0347984
UMLS CUI [1,4]
C2987125
UMLS CUI [2,1]
C0451149
UMLS CUI [2,2]
C2116331
UMLS CUI [2,3]
C0347984
UMLS CUI [2,4]
C2987125
FACT-ES, subscore
Description

As a permission is needed for use of this questionnaire, the actual 6 questions are not part of this version of the standard set. Instead you can note the total score. The ICHOM OID's are: FACTES_Q01 (BRM1), FACTES_Q02 to FACTES_Q06 (ES4-ES8) INCLUSION CRITERIA: All patients TIMING: Baseline, 6 months, 1 year post treatment, tracked annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C3889662
UMLS CUI [1,2]
C0449820
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Similar models

Follow-up, 1+2 years post treatment - Patient-reported

1 Formulaires
Name
Type
Description | Question | Decode (Coded Value)
Type de données
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Patient's last name
Item
Patient's last name:
text
C1299487 (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
Treatment variables
Surgery: No
Item
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 0 = No
boolean
C1298908 (UMLS CUI [1,1])
C0543467 (UMLS CUI [1,2])
Surgery: Breast reconstruction surgery
Item
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 1 = Breast reconstruction surgery
boolean
C0543467 (UMLS CUI [1,1])
C0085076 (UMLS CUI [1,2])
Surgery: Mastectomy
Item
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 2 = Mastectomy
boolean
C0543467 (UMLS CUI [1,1])
C0024881 (UMLS CUI [1,2])
Surgery: Axillary dissection
Item
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 3 = Axillary dissection
boolean
C0543467 (UMLS CUI [1,1])
C0193867 (UMLS CUI [1,2])
Surgery: Unknown
Item
Have you had one of the following re-operations since your surgery for breast cancer? (select all that aplly) 999 = Unknown
boolean
C0543467 (UMLS CUI [1,1])
C0439673 (UMLS CUI [1,2])
Surgery date
Item
If yes, when did you have your re-operation?
date
C1624150 (UMLS CUI [1])
Systemic therapy: no, never had systemic treatment
Item
Are you currently receiving systemic (ie drug) treatment for breast cancer? 0=no, never had systemic treatment
boolean
C1515119 (UMLS CUI [1,1])
C2003901 (UMLS CUI [1,2])
Systemic therapy: yes, but the treatment has stopped
Item
Are you currently receiving systemic (ie drug) treatment for breast cancer? 1=yes, but the treatment has stopped
boolean
C1515119 (UMLS CUI [1])
C0013227 (UMLS CUI [2,1])
C2746065 (UMLS CUI [2,2])
Systemic therapy: yes, on chemotherapy
Item
Are you currently receiving systemic (ie drug) treatment for breast cancer? 2=yes, on chemotherapy
boolean
C1515119 (UMLS CUI [1])
C0392920 (UMLS CUI [2])
Systemic therapy: yes, on targeted therapy
Item
Are you currently receiving systemic (ie drug) treatment for breast cancer? 3=yes, on targeted therapy
boolean
C1515119 (UMLS CUI [1])
C2985566 (UMLS CUI [2])
Systemic therapy: yes, on hormone therapy
Item
Are you currently receiving systemic (ie drug) treatment for breast cancer? 4= yes, on hormone therapy
boolean
C1515119 (UMLS CUI [1])
C0279025 (UMLS CUI [2])
Systemic therapy: unknown
Item
Are you currently receiving systemic (ie drug) treatment for breast cancer? 999=unkown
boolean
C1515119 (UMLS CUI [1])
C0439673 (UMLS CUI [2])
Systemic therapy date
Item
If the treatment has stopped, when did you stop your treatment?
date
C1515119 (UMLS CUI [1,1])
C3173309 (UMLS CUI [1,2])
Item Group
Degree of health
EORTC QLQ-C30, total score
Item
EORTC QLQ-C30, total score
integer
C4055104 (UMLS CUI [1,1])
C2964552 (UMLS CUI [1,2])
EORTC QLQ-BR23, total score
Item
EORTC QLQ-BR23, total score
integer
C4724921 (UMLS CUI [1,1])
C0451149 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
BREAST-Q Mastectomy, total score
Item
BREAST-Q Mastectomy, total score
integer
C4683551 (UMLS CUI [1,1])
C0024881 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
BREAST-Q Breast conserving therapy, total score
Item
BREAST-Q Breast conserving therapy, total score
integer
C4683551 (UMLS CUI [1,1])
C0917927 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
BREAST-Q Reconstruction, total score
Item
BREAST-Q Reconstruction, total score
integer
C4683551 (UMLS CUI [1,1])
C0524865 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
Item
Please indicate the extent to which you have experienced the following symptom during the past week. During the past week: 1. Have you had tingling hands or feet?
integer
C0451149 (UMLS CUI [1,1])
C2116350 (UMLS CUI [1,2])
C0347984 (UMLS CUI [1,3])
C2987125 (UMLS CUI [1,4])
C0451149 (UMLS CUI [2,1])
C2116331 (UMLS CUI [2,2])
C0347984 (UMLS CUI [2,3])
C2987125 (UMLS CUI [2,4])
EORTC QLQ-LMC21, Tinglings hands/feet
Code List
Please indicate the extent to which you have experienced the following symptom during the past week. During the past week: 1. Have you had tingling hands or feet?
CL Item
Not at all (0)
C2984077 (UMLS CUI-1)
(Comment:en)
CL Item
A little (1)
C2984078 (UMLS CUI-1)
(Comment:en)
CL Item
Quite a bit (2)
C2984080 (UMLS CUI-1)
(Comment:en)
CL Item
Very much (3)
C2984081 (UMLS CUI-1)
(Comment:en)
FACT-ES, subscore
Item
FACT-ES, subscore
integer
C3889662 (UMLS CUI [1,1])
C0449820 (UMLS CUI [1,2])
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