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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
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- 4/30/20 - 1 form, 2 itemgroups, 41 items, 1 language
Itemgroups: Administrative Data, Patient-Reported Health and Wellbeing
CHRONIC KIDNEY DISEASE DATA COLLECTION Version 1.0.0 Revised October 25th, 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: Chronic Kidney Disease Stage G3a/A3 | Chronic Kidney Disease StageG 3b/A2/A3 | Chronic Kidney Disease Stage G4 | Chronic Kidney Disease Stage G5 (KDIGO 2012 Stages) Treatment Approaches: Pre-RRT = Pre-Renal Replacement Therapy | HD = Haemodialysis | PD = Peritoneal Dialysis | Tx = Renal Transplantation | CC = Conservative Care This ODM-file contains patient reported outcome variables, to be collected at baseline and 6-monthly (HD, PD and CC) or annually (Pre-RRT and Tx) after that, from the following surveys: PROMIS-Global Health and PROMIS-29: 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. RAND-36: The RAND 36-Item Short Form Survey (SF-36) was developed at RAND as part of the Medical Outcomes Study: https://www.rand.org/health/surveys_tools/mos/36-item-short-form.html . Publication: Verberne WR, Das-Gupta Z, Allegretti AS, et al. Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. American Journal of Kidney Diseases. Volume 73, Issue 3, 2019, Pages 372-384, ISSN 0272-6386, https://doi.org/10.1053/j.ajkd.2018.10.007 ICHOM was supported for the Chronic Kidney Disease Standard Set by NSW Agency for Clinical Innovation, Providence Health and Services, ERCPA, santeon and Dutch Kidney Foundation. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 3 itemgroups, 7 items, 1 language
Itemgroups: Administrative Data, Degree of Health, Burden of Care
HEART FAILURE DATA COLLECTION Version 1.1.4 Revised October 31st, 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: Heart Failure Treatment Approaches: Pharmacotherapy | Invasive Therapy | Rehabilitation This ODM-file contains patient-reported outcome variables. It should be tracked 6-monthly for life, starting 30 days and 6 months post-index event. The collection rhythm has to be reset after an acute admission (including complications), starting anew at 30 days post-discharge and 6 months post-hospital admission, and tracked 6-monthly from then on. Use of the following Scores for this standard set: KCCQ-12: Kansas City Cardiomyopathy Questionnaire-Short Version: You can obtain a license to use this instrument at your institution by visiting http://cvoutcomes.org/licenses NYHA – New York Heart Association Functional Classification: The NYHA is free for all health care organizations, and a license is not needed. PROMIS Physical Function Short Form 4a – Patient-Reported Outcome Measurement Information System: PROMIS Physical Function is free for all health care organizations, and a license is not needed. For more information, please visit http://www.healthmeasures.net/explore-measurement-systems/promis/obtain-administer-measures . 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. Patient Health Questionnaire (PHQ-2): 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. ICHOM was supported for the Heart Failure Standard Set by GIG Cymru NHS Wales, American Heart Association, British Heart Foundation, Heart Failure Association of the ESC and European Society of Cardiology. Publication: Burns DJP, Arora J, Okunade O, Beltrame JF, Bernardez-Pereira S, Crespo-Leiro MG, et al. International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients. JACC: Heart Failure. 2020 Mar 1;8(3):212–22. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 4 itemgroups, 17 items, 1 language
Itemgroups: Administrative Data, Acute Complications of Treatment, Disease Recurrence, Patient-Reported Health Status
LOW BACK PAIN DATA COLLECTION Version 2.0.3 Revised August 24th, 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: Lumbar Disc Herniation | Lumbar Stenosis | Lumbar Spondylolisthesis | Degenerative Scoliosis | Adult Idiopathic Scoliosis | Degenerative Disc Disorder | Other Degenerative Lumbar Disorders | Mechanical, Acute, and Chronic Lumbar Back Pain and Back-Related Leg Pain Conditions Not Covered: Individuals < 18 Years of Age | Spinal Infection | Spinal Tumor | Spinal Fractures | Traumatic Dislocation | Congenital Scoliosis Documented as >20 Degrees, Moderate, Large, or Severe Treatment Approaches: Conservative Therapy (e.g. physical therapy, chiropractic, drug therapy, injections, etc.) | Surgical Therapy (e.g. spinal fusion, decompression, or discectomy) This ODM-file contains Patient reported Outcome Variables to be assessed at different timepoints: 3*, 6 months, 1, 2, 5* year after index event or when occurs (*recommended, but not essential). With use of the following Scores: Surveys used: ODI - Oswestry Disability Index Version 2.1a: The ODI is free for all health care organizations, but a license is needed for use (therefore not included verbatimly in this version of the standard set). Please visit eprovide: https://eprovide.mapi-trust.org/ NPRS - Numerical Pain Rating Scale: The NPRS is free for all health care organizations, and a license is not needed. EQ-5D-3L - EuroQol‐5D descriptive system (EQ-­5D‐3L) and visual analogue scale (EQ-­VAS): The EQ-5D-3L is free for non-profits and academic research, but a license is needed for use (therefore not included verbatimly in this version of the standard set). https://euroqol.org/support/how-to-obtain-eq-5d/ Publication: R Carter Clement, Adina Welander, Caleb Stowell, Thomas D Cha, John L Chen, Michelle Davies, Jeremy C Fairbank, Kevin T Foley, Martin Gehrchen, Olle Hagg, Wilco C Jacobs, Richard Kahler, Safdar N Khan, Isador H Lieberman, Beth Morisson, Donna D Ohnmeiss, Wilco C Peul, Neal H Shonnard, Matthew W Smuck, Tore K Solberg, Bjorn H Stromqvist, Miranda L Van Hooff, Ajay D Wasan, Paul C Willems, William Yeo & Peter FRitzell (2015) A proposed set of metrics for standardized outcome reporting in the management of low back pain, Acta Orthopaedica, 86:5, 523-533 ICHOM was supported for the Low Back Pain Standard Set by Arthritis Research UK. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 3 itemgroups, 18 items, 1 language
Itemgroups: Administrative Data, Symptoms, function and quality of life, Survival and Disease Control
INFLAMMATORY BOWEL DISEASE DATA COLLECTION Version 1.0.1 Revised April 10th, 2017 Based mainly on the above version, additions/modifications August 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 Covered: An adult (>16) with a diagnosis of Inflammatory Bowel Disease (IBD) including Crohn’s disease, ulcerative colitis and indeterminate colitis (or IBD unclassified) Treatment Approaches: Medical | Surgical | Supportive This ODM-file contains Patient reported Forms. Timepoints: Baseline, 6 months and anually. 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. Survey used: IBD-Control PROM : IBD-Control is made available to the IBD community without license or fees, but the authors retain copyright and request that the original paper is cited in any published output. For more details, see: Bodger et al. Development and validation of a rapid, generic measure of disease control from the patient’s perspective: the IBD-control questionnaire. Gut 2014;63(7):1092-102. Please note, only some questions of the IBD-Control questionnaire are asked, therefore a total score is not applicable or requested within this guide. ICHOM was supported for this standard set by Oxford Academic Health Science Network (partly funded by AbbVie). Kim AH, Roberts C, Feagan BG, et al. Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease — an International, Cross-disciplinary Consensus. Journal of Crohn's and Colitis. 2017;1–11. doi:10.1093/ecco-jcc/jjx161 For this version of the standard set, semantic annotation with UMLS CUIs has been added.