Keywords
Patient Reported Outcome (PRO) ×
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Table of contents
  1. 1. Clinical Trial
  2. 2. Routine Documentation
  3. 3. Registry/Cohort Study
  4. 4. Quality Assurance
  5. 5. Data Standard
  6. 6. Patient-Reported Outcome
  7. 7. Medical Specialty
Selected data models

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- 4/30/20 - 1 form, 3 itemgroups, 16 items, 1 language
Itemgroups: Administrative Data, Burden of care, Health literacy and beliefs
ICHOM Hypertension in low- and middle-income countries data collection Version 1.0.0 Revised: November 3rd, 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. The following condition and treatment approaches (or interventions) are covered by our Standard Set. Condition: Hypertension (ICD-10: I10) Treatment Approaches: Pharmacological and Non-Pharmacological Collecting Patient-Reported Outcome Measures: Survey Used: EuroQol-5D-3L (EQ-5D-3L). As a licence is needed for use of EQ-5D-3L questionnaires, the actual questions are not part of this version of the standard set. For licensing information see: https://euroqol.org/support/how-to-obtain-eq-5d/ This document contains the 6 month review (6-monthly for life) - Patient-reported form. It has to be filled in 6 months after patient's entry into set as well as 6-monthly for life. PROMIS Single Question on erectile Dysfunction. Free for use in clinical practice. As http://www.nihpromis.org/ is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Beliefs about Medication Questionnaire (BMQ)-Specific: Copyrighted, permission to use the scale can be obtained from Professor Rob Horne’s research team. The scoring guide can be found in the original validation article: Horne et al. (1999) The beliefs about medicines questionnaire: The development and evaluation of a new method for assessing the cognitive representation of medication. Psychology & Health, 14:1. Hill-Bone Compliance to High Blood Pressure Therapy Scale - South Africa Version: Permission to use the scale can be obtained from Estelle V. Lambert’s research team, The scoring guide can be found in the original validation article: Lambert, E.V. et al. (2006) Cross-Cultural Validation of the Hill-Bone Compliance To High Blood Pressure Therapy Scale in a South African, Primary Healthcare Setting. Ethnicity and Disease, 16. WHO STEPS Instrument. Free for use in clinical practice and a license is not required. http://www.who.int/chp/steps/instrument/en/ International Physical Activity Questionnaire(IPAQ)-Short Form: Publically available, open access, and no permissions are required to use it. https://sites.google.com/site/theipaq/ Alternative Quality of Life Surveys: PROMIS Global-10 Free for use in clinical practice. As http://www.nihpromis.org/ is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Veteran’s Rand 12-Item Health Survey (VR-12). Free for all health care organizations, license required and can be requested at: http://bit.ly/2ir84sG. As a license is needed, the actual questions are not part of this version of the standard set. 12-Item Short Form Survey (SF-12). As a license is needed for use of SF-12 questionaires, the actual questions are not part of this version of the standard set. For more information see: http://bit.ly/2AcNLrme This Standard set was supported by the Novartis Foundation. Publication: Zack R, Okunade O, Olson E, et al. Improving Hypertension Outcome Measurement in Low- and Middle-Income Countries. Hypertension. 2019;73:990–997. doi: 10.1161/HYPERTENSIONAHA.118.11916 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 11 itemgroups, 55 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Associated clinical history, Outcome, Carer quality of life, Health-Related Quality of Life, Overall quality of wellbeing, Neuropsychiatric, Clinical Dementia Rating, Daily Living, Cognitive
ICHOM Dementia data collection Version 1.0.1 Revised: April 3rd, 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 Dementia, the following conditions are covered by the Standard Set. Condition: Alzheimer’s disease | Vascular dementia | Dementia in other diseases classified elsewhere (e.g. dementia with Lewy bodies and fronto-temporal dementia) Stages: Early | Middle | Late This document contains the Annual - Patient/Proxy-Reported Form. It has to be filled in annually (from Baseline). Note: Please fill in parallel the document "6-monthly - Patient/Proxy-Reported Form". Collecting Clinician and Patient-Reported Outcome Measures: Neuropsychiatric Inventory (NPI). Copyrighted, fees only for industry-sponsored research. No republishing without permission of the originator (JL Cummings, 1994). Therefore (for now) only the total score will be included in this version of the standard set. Bristol Activity Daily Living Scale (BADLS). As redistribution possibility is not yet cleared, for now only the total score will be included in this version of the standard set. Quality of Life-AD (QOL-AD). Use of the scale in clinical practice or by academic users is free as long as no funding is received from commercial users, however a license is required. Therefore only the total score score will be included in this version of the standard set. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of Life in Alzheimer’s disease: Patient and Caregiver Reports. Journal of Mental Health and Aging. 1999;5(1):21-32 Quality of Wellbeing Scale-Self Administered (QWB-SA). The QWB-SA may be used free of charge by non-profit organizations that provide evidence of their non-profit status and agree to provide a copy of relevant, non-identifiable project data with UCSD; Scoring instructions are provided free of charge after a signed copyright agreement is received. As https://hoap.ucsd.edu/qwb-info/NotforProfit-Copyright.pdf is the official permission site, only the total score score will be included in this version of the standard set. EuroQol-5D (EQ-5D). As a license is required for use this questionaire, only the total score will be included in this version of the standard set. Veterans RAND 12 (VR-12). As this questionaire is copyrighted and needs an user agreement for use, only the total score score will be included in this version of the standard set. Clinical Dementia Rating (CDR). This questionaire is Copyrighted.The Washington University The Charles F. and Joanne Knight Alzheimer’s Disease Research Center (Knight ADRC) holds the United States Copyright for the Clinical Dementia Rating (CDR). Therefore only the total score score will be included in this version of the standard set. Montreal Cognitive Assessment (MoCA copyrighted). For clinical and educational use, MoCA© may be used, reproduced, and distributed without permission. This Standard set was supported by the Scottish Government. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 2 itemgroups, 7 items, 1 language
Itemgroups: Administrative Data, Patient-reported health status
ICHOM Stroke data collection Version 2.0.1 Revised: June 21th, 2018 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 stroke, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Patients who have been hospitalized for an index ischemic stroke (IS) or intracereberal hemorrhage (ICH). Patients with subarachnoid hemorrhage (SAH) are excluded. Inclusion of transient ischemic attack (TIA) or patients with IS or ICH who are evaluated but not hospitalized is not required. Treatment Approaches: IV Thrombolysis | Thrombectomy | Hemicraniectomy This form contains Discharge +7 days patient-reported form. If a second stroke occurs between discharge and the “90 day post index” collection, you should reset the measurement scale, treating them as a new patient. Questionnaires used in this standard set: PROMIS-10. It is free for all health care organizations, and a license is not needed. There are translations available for Spanish, French, German,and Dutch. As http://www.nihpromis.org is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Simplified Modified Rankin Scale Questionnaire (smRSq) – Clinician. There is no patent on thes smRSq or fee for using it in clinical practice; however Lippincott Williams & Wilkins (LWW) own the rights to the published article where the smRSq is introduced. Therefore here only the total score is included. The smRSq flow chart can be found at http://stroke.ahajournals.org/content/42/8/2276 “Simplified Modified Rankin Scale Questionnaire Reproducibility Over the Telephone and Validation With Quality of Life” Stroke 2011; 42: 2276-2279 © 2011 American Heart Association, Inc. Wolters Kluwer Health. Publication: Salinas J, Sprinkhuizen SM, Ackerson T, et al. An International Standard Set of Patient-Centered Outcome Measures After Stroke. Stroke. 2015;47(1):180–186. doi:10.1161/STROKEAHA.115.010898 For the Stroke Standard Set ICHOM was supported by the American Heart Association and the American Stroke Association. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 4 itemgroups, 11 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Survival and disease control, Patient-reported health status
ICHOM Stroke data collection Version 2.0.1 Revised: June 21th, 2018 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 stroke, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Patients who have been hospitalized for an index ischemic stroke (IS) or intracereberal hemorrhage (ICH). Patients with subarachnoid hemorrhage (SAH) are excluded. Inclusion of transient ischemic attack (TIA) or patients with IS or ICH who are evaluated but not hospitalized is not required. Treatment Approaches: IV Thrombolysis | Thrombectomy | Hemicraniectomy This form contains Follow-up - patient reported form. The items cover 90 days post admission for index event. If a second stroke occurs between discharge and the “90 day post index” collection, you should reset the measurement scale, treating them as a new patient. Questionnaires used in this standard set: PROMIS-10. It is free for all health care organizations, and a license is not needed. There are translations available for Spanish, French, German,and Dutch. As http://www.nihpromis.org is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Simplified Modified Rankin Scale Questionnaire (smRSq) – Clinician. There is no patent on thes smRSq or fee for using it in clinical practice; however Lippincott Williams & Wilkins (LWW) own the rights to the published article where the smRSq is introduced. Therefore here only the total score is included. The smRSq flow chart can be found at http://stroke.ahajournals.org/content/42/8/2276 “Simplified Modified Rankin Scale Questionnaire Reproducibility Over the Telephone and Validation With Quality of Life” Stroke 2011; 42: 2276-2279 © 2011 American Heart Association, Inc. Wolters Kluwer Health. Publication: Salinas J, Sprinkhuizen SM, Ackerson T, et al. An International Standard Set of Patient-Centered Outcome Measures After Stroke. Stroke. 2015;47(1):180–186. doi:10.1161/STROKEAHA.115.010898 For the Stroke Standard Set ICHOM was supported by the American Heart Association and the American Stroke Association. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 3 itemgroups, 19 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Vascular and systemic
ICHOM Stroke data collection Version 2.0.1 Revised: June 21th, 2018 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 stroke, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Patients who have been hospitalized for an index ischemic stroke (IS) or intracereberal hemorrhage (ICH). Patients with subarachnoid hemorrhage (SAH) are excluded. Inclusion of transient ischemic attack (TIA) or patients with IS or ICH who are evaluated but not hospitalized is not required. Treatment Approaches: IV Thrombolysis | Thrombectomy | Hemicraniectomy This form contains index event patient-reported form. The items cover the entrance into outcome tracking system for Stroke. If a second stroke occurs between discharge and the “90 day post index” collection, you should reset the measurement scale, treating them as a new patient. Questionnaires used in this standard set: PROMIS-10. It is free for all health care organizations, and a license is not needed. There are translations available for Spanish, French, German,and Dutch. As http://www.nihpromis.org is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Simplified Modified Rankin Scale Questionnaire (smRSq) – Clinician. There is no patent on thes smRSq or fee for using it in clinical practice; however Lippincott Williams & Wilkins (LWW) own the rights to the published article where the smRSq is introduced. Therefore here only the total score is included. The smRSq flow chart can be found at http://stroke.ahajournals.org/content/42/8/2276 “Simplified Modified Rankin Scale Questionnaire Reproducibility Over the Telephone and Validation With Quality of Life” Stroke 2011; 42: 2276-2279 © 2011 American Heart Association, Inc. Wolters Kluwer Health. Publication: Salinas J, Sprinkhuizen SM, Ackerson T, et al. An International Standard Set of Patient-Centered Outcome Measures After Stroke. Stroke. 2015;47(1):180–186. doi:10.1161/STROKEAHA.115.010898 For the Stroke Standard Set ICHOM was supported by the American Heart Association and the American Stroke Association. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 3 itemgroups, 6 items, 1 language
Itemgroups: Patient ID, Clinician Reported Outcomes: Glycemic Control, Clinician Reported Outcomes: Acute Events
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 every 6 months by the patient. Maybe left out, if the questions were already answered in the Clinician-reported 6-monthly form. 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.
- 4/30/20 - 1 form, 2 itemgroups, 4 items, 1 language
Itemgroups: Administrative data, Degree of health
ICHOM Lung cancer data collection Version 2.3.1 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 Lung Cancer, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Small Cell and Non-Small Cell Lung Cancer Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy | Immunotherapy | Other This document contains Follow-up - Patient reported form. It covers: 3 months post initiation of treatment, 6 months post initiation of treatment, 1 year post initiation of treatment, 2 years post initiation of treatment and 3 years post initiation of treatment. Collecting Patient-Reported Outcome Measures: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). European Organization for Research and Treatment of Cancer Quality of Life Lung Cancer-Specific Questionnaire (EORTC QLQ-LC13). Both are free for all health care organizations, but a license is needed for use. http:// groups.eortc.be/qol/eortc-qlq-c30 is the official distribution site for EORTC QLQ-C30 and EORTC QLQ-LC13 questionnaires. Therefore only the total score will be included in this version of the standard set. Publication: Mak KS, van Bommel AC, Stowell C, et al. Defining a standard set of patient-centred outcomes for lung cancer. Eur Respir J. 2016;48(3):852–860. doi:10.1183/13993003.02049-2015 For this standard set ICHOM was supported by the Alliance of Dedicated Cancer Centers. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 2 itemgroups, 19 items, 1 language
Itemgroups: Administrative Data, Optional measures
ICHOM Hip and Knee Osteoarthritis Study description: ICHOM Hip and Knee Osteoarthritis data collection Version 2.2.1 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 Hip and Knee Osteoarthritis, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions : All patients seeking treatment for osteoarthritis of the hip or knee, whether surgical or non-surgical Treatment Approaches: Non-Surgical: Lifestyle intervention | Patient education | Physiotherapy | Walking aid or orthosis | Topical and oral medication | Intra-articular injection Surgical: Osteotomy | Joint replacement | Other forms of surgical treatment This document contains the Optional measures - Patient-reported form. ICHOM includes the option of more frequent collection of some measures for direct use in clinical care. For example, more frequent collection of functional outcomes may be helpful following surgery or major changes in treatment. ICHOM leave the timing of this data collection to individual institutions or clinicians. Collecting Patient-Reported Outcome Measures: Hip Disability and Osteoarthritis Outcome Score - Physical Function Shortform (HOOS-PS). http://www.koos.nu/ Knee Injury and Osteoarthritis Outcome Score - Physical Function Shortform (KOOS-PS). http://www.koos.nu/ Veterans RAND 12 (VR-12) or Short Form 12 Health Survey (SF- 12). As a request for access and an agreement to terms of use are necessary before access, the actual questions of these questionnaires are not part of this version of the standard set. EuroQol-5D descriptive system (EQ- 5D-3L) and visual analogue scale (EQ-VAS). As a license is needed for use of EuroQol questionnaires, the actual questions are not part of this version of the standard set. *For a description of an algorithm to convert between the EQ-5D-3L and SF-12, please see: Le QA. Probabilistic mapping of the health status measure SF-12 responses and EQ-5D using the US-population-based scoring models. Qual Life Res. 2014 Mar; 23(2): 459-66. Please see the above Veterans RAND website for help converting the VR-12 to the SF-12. For this standard set ICHOM was supproted by Hoag Orthopedic Institute, the Connecticut Joint Replacement Institute, and Harvard Pilgrim Health Care and Arthritis Research. Publication: Rolfson O, Wissig S, van Maasakkers L, et al. Defining an International Standard Set of Outcome Measures for Patients With Hip or Knee Osteoarthritis: Consensus of the International Consortium for Health Outcomes Measurement Hip and Knee Osteoarthritis Working Group. Arthritis Care Res (Hoboken). 2016;68(11):1631–1639. doi:10.1002/acr.22868 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 3 itemgroups, 11 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Patient-Reported Health Status
CORONARY ARTERY DISEASE DATA COLLECTION Version 2.0.3 Revised: April 5th, 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. Conditions: Asymptomatic Coronary Artery Disease | Stable Angina | Acute Coronary Syndrome (Includes AMI) Treatment Approaches: Lifestyle Modification | Drug Therapy | Percutaneous Coronary Intervention (PCI) | Coronary Artery Bypass Grafting (CABG) This form contains the patient-reported Outcome questionnaires. They should be assessed at the entry event, 30 days after it and annually for 5 years. A new revascularization procedure or a new diagnosis of ACS constitutes a new index event, and tracking of patient-reported health status should reset from this point, tracking again at +30 days, and then annually for 5 years. Questionnaires used in this Form: Rose Dyspnea Scale: The Rose Dyspnea Scale is free for all health care organizations, and a license is not needed. More information may be found at http://www.ahjonline.com/article/S0002-8703(09)00266-X/abstract Patient Health Questionnaire (PHQ-2): The PHQ-2 is free for all health care organizations, and a license is not needed. Copyright Pfizer, more Information on http://www.phqscreeners.com/ Seattle Angina Questionnaire (SAQ-7): Due to the need for a license for use of the SAQ-7 the actual questions of SAQ-7 will not be part of this version of the standard set. Publication: McNamara RL, Spatz ES, Kelley TA, et al. Standardized Outcome Measurement for Patients With Coronary Artery Disease: Consensus From the International Consortium for Health Outcomes Measurement (ICHOM). J Am Heart Assoc. 2015;4(5):e001767. Published 2015 May 19. doi:10.1161/JAHA.115.001767 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 4 itemgroups, 67 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Baseline Clinical Factors, Degree of health
ADVANCED PROSTATE CANCER DATA COLLECTION Version 2.3.1 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. Conditions: All patients with advanced prostate cancer, either having metastatic disease or biochemical recurrence progressing after salvage treatment or ineligible for salvage treatment. Patients with biochemical recurrence treated with salvage therapy are referred to the localized prostate cancer set. Treatment Approaches: Hormonal Therapy | Chemotherapy | Immunotherapy | Radiopharmaceuticals | Radiation | Interventions for Complications of Local Progression This form contains patient-reported variables, to be assessed at baseline. Questionnaires used in this form: 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). 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-C30): For use of the EORTC QLQ-C30 a license is needed, therefore the questions will not be part of this version of the standard set. (eortc.be) The following paper has been published about development of this standard set: Morgans AK, van Bommel ACM, Stowell C, Abrahm JL, Basch E, Bekelman JE, et al. Development of a Standardized Set of Patient-centered Outcomes for Advanced Prostate Cancer: An International Effort for a Unified Approach. Eur Urol. 2015 Nov;68(5):891–8. For the standard set ICHOM has been supported by the Movember Foundation. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 2 itemgroups, 39 items, 1 language
Itemgroups: Administrative Data, Degree of health
ADVANCED PROSTATE CANCER DATA COLLECTION Version 2.3.1 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. Conditions: All patients with advanced prostate cancer, either having metastatic disease or biochemical recurrence progressing after salvage treatment or ineligible for salvage treatment. Patients with biochemical recurrence treated with salvage therapy are referred to the localized prostate cancer set. Treatment Approaches: Hormonal Therapy | Chemotherapy | Immunotherapy | Radiopharmaceuticals | Radiation | Interventions for Complications of Local Progression This form contains patient-reported outcome variables. To be assessed 6 months and 1 year post (initial) treatment and annually for life from then on. Questionnaires used in this form: 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). 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-C30): For use of the EORTC QLQ-C30 a license is needed, therefore the questions will not be part of this version of the standard set. (eortc.be) The following paper has been published about development of this standard set: Morgans AK, van Bommel ACM, Stowell C, Abrahm JL, Basch E, Bekelman JE, et al. Development of a Standardized Set of Patient-centered Outcomes for Advanced Prostate Cancer: An International Effort for a Unified Approach. Eur Urol. 2015 Nov;68(5):891–8. For the standard set ICHOM has been supported by the Movember Foundation. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 2 itemgroups, 10 items, 1 language
Itemgroups: Administrative Data, Degree of health
COLORECTAL CANCER DATA COLLECTION Version 1.1.2 Revised: November 6th, 2017 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. Conditions: All patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) Excluded Conditions: Non-adenocarcinoma, non-primary colorectal tumors and patients with recurrent disease at baseline will be excluded. Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy In this standard set (parts of) the following questionnaires/scores are used: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30): Due to the need for a license, the EORTC QLQ-C30 questions are not included in this version of the standard set. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C29): Due to the need for a license, the EORTC QLQ-C29 questions are not included in this version of the standard set. Memorial Sloan-Kettering Cancer Center (MSKCC) Bowel Function Instrument: Only 4 of the items used. According to ICHOM it is free to use for all health care organizations and no license is needed. Temple, L., Bacik, J., Savatta, S. et al. The Development of a Validated Instrument to Evaluate Bowel Function After Sphincter-Preserving Surgery for Rectal Cancer. Dis Colon Rectum (2005) 48: 1353. 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. ICHOM was supported by Alliance of Dedicated Cancer Centers (CZ, DICA, Bowel Cancer Australia) for this standard set. Publication: Zerillo JA, Schouwenburg MG, van Bommel ACM, et al. An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer. JAMA Oncol. 2017;3(5):686–694. doi:10.1001/jamaoncol.2017.0417 For this version of the standard set, semantic annotation with UMLS CUIs has been added.