ID

40544

Description

LOCALIZED PROSTATE CANCER DATA COLLECTION Version 2.0.5 Revised: April 7th , 2017 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: Localized prostate cancer Treatment Approaches: Active Surveillance | Watchful Waiting | Radical Prostatectomy* | External Beam Radiation Therapy* | Androgen Deprivation Therapy (ADT)* | Focal Therapy* | Other* * These should also be collected as salvage treatments where necessary This ODM-file contains Patient-reported Health Status. To be used before treatment, 6 months after treatment and annually up to ten years after treatment. Surveys used: Expanded Prostate Cancer Index Composite (EPIC-26): The EPIC-26 is free for all health care organizations, and a license is not needed. The scoring guide may be found at http://www.med.umich.edu/urology/research/EPIC/EPIC-26-Scoring-1.2007.pdf ; Wei J, Dunn R, Litwin M, Sandler H, and Sanda M. "Development and Validation of the Expanded Prostate Cancer Index Composite (EPIC) for Comprehensive Assessment of Health-Related Quality of Life in Men with Prostate Cancer", Urology. 56: 899-905, 2000. For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. Utilization of Sexual Medications/Devices: The Utilization of Sexual Medications/Devices is free for all health care organizations, and a license is not needed (according to ICHOM). This standard set uses questions 2 and 3 a-e. Refer to http://dx.doi.org/10.1016/j.urology.2006.01.077 for more information European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ- PR25): The EORTC QLQ-PR25 is free for all health care organizations, but a license is needed for use. Therefore it will not be integrated verbatim in this Version of the questionnaire. This standard set uses only question 50. For more information, please visit http://groups.eortc.be/qol/eortc-qlq-c30 . ICHOM was supported for the Localized Prostate Cancer Standard Set by the Movember Foundation. Publication: Martin NE, Massey L, Stowell C, et al. Defining a standard set of patient-centered outcomes for men with localized prostate cancer. Eur Urol. 2015;67(3):460‐467. doi:10.1016/j.eururo.2014.08.075 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

www.ichom.org

Keywords

Versions (2)
  1. 8/22/18 8/22/18 - 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 Localized Prostate Cancer

English

Patient-Reported Form (Questionnaires)

1 forms  
Patient ID
Description

Patient ID

Alias
UMLS CUI-1
C1269815
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 TYPE: Numerical RESPONSE OPTIONS: According to institution

Data type

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline (e.g. before treatment, 6 months after treatment, 1 year follow-up, ...) for up to 10 years after treatment
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
EPIC-26
Description

EPIC-26

Alias
UMLS CUI-1
C4288133
This questionnaire is designed to measure Quality of Life issues in patients with Prostate cancer. To help us get the most accurate measurement, it is important that you answer all questions honestly and completely. Remember, as with all medical records, information contained within this survey will remain strictly confidential. 1: Over the past 4 weeks, how often have you leaked urine?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289637
2: Which of the following best describes your urinary control during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289645
3: How many pads or adult diapers per day did you usually use to control leakage during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289630
4a: How big a problem, if any, has the following been for you during the last 4 weeks? Dripping or leaking urine
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289641
4b: Pain or burning on urination
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289629
4c: Bleeding with urination
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289644
4d: Weak urine stream or incomplete emptying
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289625
4e: Need to urinate frequently during the day
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289626
5: Overall, how big a problem has your urinary function been for you during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289631
6a: How big a problem, if any, has the following been for you? Urgency to have a bowel movement
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289627
6b: Increased frequency of bowel movements
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289636
6c: Losing control of your stools
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289634
6d: Bloody stools
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4287870
6e: Abdominal/Pelvic/Rectal pain
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289649
7: Overall, how big a problem have your bowel habits been for you during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289633
8a: How would you rate the following during the last 4 weeks? Your ability to have an erection?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289647
8b: Your ability to reach orgasm (climax)?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289646
9: How would you describe the usual QUALITY of your erections during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289628
10: How would you describe the FREQUENCY of your erections during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289639
11: Overall, how would you rate your ability to function sexually during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289648
12: Overall, how big a problem has your sexual function or lack of sexual function been for you during the last 4 weeks?
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289632
13a: How big a problem during the last 4 weeks, if any, has the following been for you? Hot flashes
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

text

Alias
UMLS CUI [1]
C4289638
13b: Breast tenderness/enlargement
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289643
13c: Feeling depressed
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289620
13d: Lack of energy
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289635
13e: Change in body weight
Description

* For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4289642
Libido Questions
Description

Libido Questions

Alias
UMLS CUI-1
C0023618
UMLS CUI-2
C0034394
Question 50 of EORTC-QLQ-PR25
Description

As a license is required for use of EORTC-QLQ-PR25 neither the acutal question nor the acutal answers will appear in this version of the ICHOM standard set. INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0451149
UMLS CUI [1,2]
C0600139
UMLS CUI [1,3]
C3816723
Have you used any medications or devices to aid or improve erections?
Description

INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030847
UMLS CUI [1,2]
C0013227
UMLS CUI [2]
C3880111
For each of the following medicines or devices, please indicate whether or not you have tried or currently use it to improve your erections: Viagra or another pill
Description

INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0663448
UMLS CUI [2,1]
C0030847
UMLS CUI [2,2]
C0994475
UMLS CUI [2,3]
C0205394
Muse (intra-urethral alprostadil suppository)
Description

INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C3237711
Penile injection therapy (such as caverject)
Description

INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0403343
Vacuum erection device (such as erect-aid)
Description

INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C3827672
Other medication/device
Description

INCLUSION CRITERIA: All patients TIMING: Before treatment, 6 months after treatment, Annually up to 10 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030847
UMLS CUI [1,2]
C0013227
UMLS CUI [1,3]
C0205394
UMLS CUI [2,1]
C3880111
UMLS CUI [2,2]
C0205394
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Similar models

Patient-Reported Form (Questionnaires)

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. before treatment, 6 months after treatment, 1 year follow-up, ...) for up to 10 years after treatment
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
EPIC-26
C4288133 (UMLS CUI-1)
Item
This questionnaire is designed to measure Quality of Life issues in patients with Prostate cancer. To help us get the most accurate measurement, it is important that you answer all questions honestly and completely. Remember, as with all medical records, information contained within this survey will remain strictly confidential. 1: Over the past 4 weeks, how often have you leaked urine?
integer
C4289637 (UMLS CUI [1])
Question 1 of EPIC-26*
Code List
This questionnaire is designed to measure Quality of Life issues in patients with Prostate cancer. To help us get the most accurate measurement, it is important that you answer all questions honestly and completely. Remember, as with all medical records, information contained within this survey will remain strictly confidential. 1: Over the past 4 weeks, how often have you leaked urine?
CL Item
More than once a day (1)
CL Item
About once a day (2)
CL Item
More than once a week (3)
CL Item
About once a week (4)
CL Item
Rarely or never (5)
Item
2: Which of the following best describes your urinary control during the last 4 weeks?
integer
C4289645 (UMLS CUI [1])
Question 2 of EPIC-26*
Code List
2: Which of the following best describes your urinary control during the last 4 weeks?
CL Item
No urinary control whatsoever (1)
CL Item
Frequent dribbling (2)
CL Item
Occasional dribbling (3)
CL Item
Total control (4)
Item
3: How many pads or adult diapers per day did you usually use to control leakage during the last 4 weeks?
integer
C4289630 (UMLS CUI [1])
Question 3 of EPIC-26*
Code List
3: How many pads or adult diapers per day did you usually use to control leakage during the last 4 weeks?
CL Item
None (0)
CL Item
1 pad per day (1)
CL Item
2 pads per day (2)
CL Item
3 or more pads per day (3)
Item
4a: How big a problem, if any, has the following been for you during the last 4 weeks? Dripping or leaking urine
integer
C4289641 (UMLS CUI [1])
Question 4a of EPIC-26*
Code List
4a: How big a problem, if any, has the following been for you during the last 4 weeks? Dripping or leaking urine
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
4b: Pain or burning on urination
integer
C4289629 (UMLS CUI [1])
Question 4b of EPIC-26*
Code List
4b: Pain or burning on urination
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
4c: Bleeding with urination
integer
C4289644 (UMLS CUI [1])
Question 4c of EPIC-26*
Code List
4c: Bleeding with urination
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
4d: Weak urine stream or incomplete emptying
integer
C4289625 (UMLS CUI [1])
Question 4d of EPIC-26*
Code List
4d: Weak urine stream or incomplete emptying
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
4e: Need to urinate frequently during the day
integer
C4289626 (UMLS CUI [1])
Question 4e of EPIC-26*
Code List
4e: Need to urinate frequently during the day
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
5: Overall, how big a problem has your urinary function been for you during the last 4 weeks?
integer
C4289631 (UMLS CUI [1])
Question 5 of EPIC-26*
Code List
5: Overall, how big a problem has your urinary function been for you during the last 4 weeks?
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item
6a: How big a problem, if any, has the following been for you? Urgency to have a bowel movement
integer
C4289627 (UMLS CUI [1])
Question 6a of EPIC-26*
Code List
6a: How big a problem, if any, has the following been for you? Urgency to have a bowel movement
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
6b: Increased frequency of bowel movements
integer
C4289636 (UMLS CUI [1])
Question 6b of EPIC-26*
Code List
6b: Increased frequency of bowel movements
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
6c: Losing control of your stools
integer
C4289634 (UMLS CUI [1])
Question 6c of EPIC-26*
Code List
6c: Losing control of your stools
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
6d: Bloody stools
integer
C4287870 (UMLS CUI [1])
Question 6d of EPIC-26*
Code List
6d: Bloody stools
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
6e: Abdominal/Pelvic/Rectal pain
integer
C4289649 (UMLS CUI [1])
Question 6e of EPIC-26*
Code List
6e: Abdominal/Pelvic/Rectal pain
CL Item
No problem (0)
CL Item
Very small problem (1)
CL Item
Small problem (2)
CL Item
Moderate problem (3)
CL Item
Big problem (4)
Item
7: Overall, how big a problem have your bowel habits been for you during the last 4 weeks?
integer
C4289633 (UMLS CUI [1])
Question 7 of EPIC-26*
Code List
7: Overall, how big a problem have your bowel habits been for you during the last 4 weeks?
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item
8a: How would you rate the following during the last 4 weeks? Your ability to have an erection?
integer
C4289647 (UMLS CUI [1])
Question 8a of EPIC-26*
Code List
8a: How would you rate the following during the last 4 weeks? Your ability to have an erection?
CL Item
Very poor to none (1)
CL Item
Poor (2)
CL Item
Fair (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
8b: Your ability to reach orgasm (climax)?
integer
C4289646 (UMLS CUI [1])
Question 8b of EPIC-26*
Code List
8b: Your ability to reach orgasm (climax)?
CL Item
Very poor to none (1)
CL Item
Poor (2)
CL Item
Fair (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
9: How would you describe the usual QUALITY of your erections during the last 4 weeks?
integer
C4289628 (UMLS CUI [1])
Question 9 of EPIC-26*
Code List
9: How would you describe the usual QUALITY of your erections during the last 4 weeks?
CL Item
None at all (1)
CL Item
Not firm enough for any sexual activity (2)
CL Item
Firm enough for masturbation and foreplay only (3)
CL Item
Firm enough for intercourse (4)
Item
10: How would you describe the FREQUENCY of your erections during the last 4 weeks?
integer
C4289639 (UMLS CUI [1])
Question 10 of EPIC-26*
Code List
10: How would you describe the FREQUENCY of your erections during the last 4 weeks?
CL Item
I NEVER had an erection when I wanted one (1)
CL Item
I had an erection LESS THAN HALF the time I wanted one (2)
CL Item
I had an erection ABOUT HALF the time I wanted one (3)
CL Item
I had an erection MORE THAN HALF the time I wanted one (4)
CL Item
I had an erection WHENEVER I wanted one (5)
Item
11: Overall, how would you rate your ability to function sexually during the last 4 weeks?
integer
C4289648 (UMLS CUI [1])
Question 11 of EPIC-26*
Code List
11: Overall, how would you rate your ability to function sexually during the last 4 weeks?
CL Item
Very poor (1)
CL Item
Poor (2)
CL Item
Fair (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
12: Overall, how big a problem has your sexual function or lack of sexual function been for you during the last 4 weeks?
integer
C4289632 (UMLS CUI [1])
Question 12 of EPIC-26*
Code List
12: Overall, how big a problem has your sexual function or lack of sexual function been for you during the last 4 weeks?
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item
13a: How big a problem during the last 4 weeks, if any, has the following been for you? Hot flashes
text
C4289638 (UMLS CUI [1])
Question 13a of EPIC-26*
Code List
13a: How big a problem during the last 4 weeks, if any, has the following been for you? Hot flashes
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item
13b: Breast tenderness/enlargement
integer
C4289643 (UMLS CUI [1])
Question 13b of EPIC-26*
Code List
13b: Breast tenderness/enlargement
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item
13c: Feeling depressed
integer
C4289620 (UMLS CUI [1])
Question 13c of EPIC-26*
Code List
13c: Feeling depressed
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item
13d: Lack of energy
integer
C4289635 (UMLS CUI [1])
Question 13d of EPIC-26*
Code List
13d: Lack of energy
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item
13e: Change in body weight
integer
C4289642 (UMLS CUI [1])
Question 13e of EPIC-26*
Code List
13e: Change in body weight
CL Item
No problem (1)
CL Item
Very small problem (2)
CL Item
Small problem (3)
CL Item
Moderate problem (4)
CL Item
Big problem (5)
Item Group
Libido Questions
C0023618 (UMLS CUI-1)
C0034394 (UMLS CUI-2)
Item
Question 50 of EORTC-QLQ-PR25
integer
C0451149 (UMLS CUI [1,1])
C0600139 (UMLS CUI [1,2])
C3816723 (UMLS CUI [1,3])
Question 50 of EORTC-PR25
Code List
Question 50 of EORTC-QLQ-PR25
CL Item
Answer 1 of Question 50 of EORTC-QLQ-PR25 (0)
(Comment:en)
CL Item
Answer 2 of Question 50 of EORTC-QLQ-PR25 (1)
(Comment:en)
CL Item
Answer 3 of Question 50 of EORTC-QLQ-PR25 (2)
(Comment:en)
CL Item
Answer 4 of Question 50 of EORTC-QLQ-PR25 (3)
(Comment:en)
Item
Have you used any medications or devices to aid or improve erections?
integer
C0030847 (UMLS CUI [1,1])
C0013227 (UMLS CUI [1,2])
C3880111 (UMLS CUI [2])
Question 2 of Utilization of Sexual Medications/Devices
Code List
Have you used any medications or devices to aid or improve erections?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
For each of the following medicines or devices, please indicate whether or not you have tried or currently use it to improve your erections: Viagra or another pill
integer
C0663448 (UMLS CUI [1])
C0030847 (UMLS CUI [2,1])
C0994475 (UMLS CUI [2,2])
C0205394 (UMLS CUI [2,3])
Question 3a of Utilization of Sexual Medications/Devices
Code List
For each of the following medicines or devices, please indicate whether or not you have tried or currently use it to improve your erections: Viagra or another pill
CL Item
Have not tried it (0)
C3844323 (UMLS CUI-1)
(Comment:en)
CL Item
Tried it but was not helpful (1)
C3827771 (UMLS CUI-1)
(Comment:en)
CL Item
It helped but I am not using it now (2)
C3829718 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it sometimes (3)
C3829719 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it always (4)
C3829720 (UMLS CUI-1)
(Comment:en)
Item
Muse (intra-urethral alprostadil suppository)
integer
C3237711 (UMLS CUI [1])
Question 3a of Utilization of Sexual Medications/Devices
Code List
Muse (intra-urethral alprostadil suppository)
CL Item
Have not tried it (0)
C3844323 (UMLS CUI-1)
(Comment:en)
CL Item
Tried it but was not helpful (1)
C3827771 (UMLS CUI-1)
(Comment:en)
CL Item
It helped but I am not using it now (2)
C3829718 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it sometimes (3)
C3829719 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it always (4)
C3829720 (UMLS CUI-1)
(Comment:en)
Item
Penile injection therapy (such as caverject)
integer
C0403343 (UMLS CUI [1])
Question 3a of Utilization of Sexual Medications/Devices
Code List
Penile injection therapy (such as caverject)
CL Item
Have not tried it (0)
C3844323 (UMLS CUI-1)
(Comment:en)
CL Item
Tried it but was not helpful (1)
C3827771 (UMLS CUI-1)
(Comment:en)
CL Item
It helped but I am not using it now (2)
C3829718 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it sometimes (3)
C3829719 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it always (4)
C3829720 (UMLS CUI-1)
(Comment:en)
Item
Vacuum erection device (such as erect-aid)
integer
C3827672 (UMLS CUI [1])
Question 3a of Utilization of Sexual Medications/Devices
Code List
Vacuum erection device (such as erect-aid)
CL Item
Have not tried it (0)
C3844323 (UMLS CUI-1)
(Comment:en)
CL Item
Tried it but was not helpful (1)
C3827771 (UMLS CUI-1)
(Comment:en)
CL Item
It helped but I am not using it now (2)
C3829718 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it sometimes (3)
C3829719 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it always (4)
C3829720 (UMLS CUI-1)
(Comment:en)
Item
Other medication/device
integer
C0030847 (UMLS CUI [1,1])
C0013227 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,3])
C3880111 (UMLS CUI [2,1])
C0205394 (UMLS CUI [2,2])
Question 3a of Utilization of Sexual Medications/Devices
Code List
Other medication/device
CL Item
Have not tried it (0)
C3844323 (UMLS CUI-1)
(Comment:en)
CL Item
Tried it but was not helpful (1)
C3827771 (UMLS CUI-1)
(Comment:en)
CL Item
It helped but I am not using it now (2)
C3829718 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it sometimes (3)
C3829719 (UMLS CUI-1)
(Comment:en)
CL Item
It helped and I use it always (4)
C3829720 (UMLS CUI-1)
(Comment:en)
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