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
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- 9/20/21 - 1 form, 5 itemgroups, 24 items, 1 language
Itemgroups: Administrative Data, Psychometrics and Sociometrics, Airway and Breathing, Mastication and Occlusion, Appearance
ICHOM Craniofacial Microsomia data collection Version 1.0.4 April 18th, 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 Craniofacial Microsomia, the following conditions and treatment approaches (or interventions) are covered by our Standard Set: Conditions*: Patient population defined as: 2 major criteria or 1 major + 1 minor criteria or 3+ minor criteria Major criteria: Mandibular hypoplasia | Microtia | Orbital/facial bone hypoplasia Assymetric facial movement Minor criteria: Facial soft tissue deficiency | Pre-auricular tags | Macrostomia | Clefting Epibulbar dermoids | Hemivertabrae Treatment Approaches: Plastic Surgery | Maxillofacial Surgery | Dentistry and Orthodontics | Otolaryngology |Ophthalmology | Pediatrics | Speech and Language | Psychology/Psychiatry | Nursing | Feeding/Nutrition | Audiology | Social Care | * Excluded diagnoses: Mandibulofacial dysostosis with microcephaly, Townes-Brocks Syndrome, Treacher Collins Syndrome, Auriculocondylar Syndrome, Bixler Syndrome, Branchiootorenal (BOR) Syndrome, CHARGE Syndrome, Miller Syndrome, Nager Syndrome, Oculoauriculofrontonasal Syndrome, Parry Rhomborg, Branchiooculofacial Syndromes (BOFS), isolated typical Tessier clefting (with no associated facial hypoplasia). This document contains the 8 years old Patient-reported Form. It has to be filled in when the patient is 8 years old. If the patient won't be able to fill in by himself/herself, the form can also be fill in by the parent(s). Collecting Patient-Reported Outcome Measures: Cleft Q - Patient/parent. As there is no permission for use of this questionnaire, only the subscores of each part will be included in this version of the standard set. For more information see: Klassen AF, Riff KWW, Longmire NM, et al. Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries. CMAJ. 2018;190(15):E455–E462. doi:10.1503/cmaj.170289, https://milo.mcmaster.ca/Copyrighted%20Works/questionnaires#Cleft-Q Young Person - CORE - Patient/parent. The YP-CORE is free for all health care organizations, and a license is not needed. Any organisation is free to reproduce the CORE Instruments in software, as well as on paper, under the terms of the Creative Commons Attribution-NoDerivatives 4.0 International (CC BY-ND 4.0) licence without payment of any licence fee. Hospital Anxiety and Depression Scale (HADS) – Patient. As there is no free licence for this scale, only the both two subscores (HADS Depression subscore, HADS Anxiety Suscore) will be included in this version of the standard set. Craniofacial Experiences Questionnaire (CFEQ) –Patient. The CFEQ is free for all health care organizations, and a license is not needed. For more information see: Roberts, R. M., & Shute, R. (2011). Living with a Craniofacial Condition: Development of the Craniofacial Experiences Questionnaire (CFEQ) for Adolescents and Their Parents. The Cleft Palate-Craniofacial Journal, 48(6), 727–735. PCC – Clinician. The PCC is free for all health care organizations, and a license is not needed. Intelligibility in Context Scale (ICS) - Parent/parent. The ICS is free for all health care organizations, and a license is not needed. For citation use CC 3.0 by-nc-nd. For more information see: http://www.csu.edu.au/research/multilingual-speech/ics WHO Growth Charts – Clinician. The WHO Growth Charts are free for all health care organizations, and a license is not needed. Pediatric Sleep Questionnaire (PSQ) – Parent. As a license agreement is needed for use of this questionnaire, only the total score will be includede in this version of the standard set. Distress Thermometer – Parent. As the source of the distress thermometer questions are not sure, only a text-item will be included in this version of the standard set. Phenotypic Assessment Tool (PAT-CFM) – Clinician. As a license agreement is needed for use of the PAT-CFM, only a text item is included in this version of the standard set. For more information see: Birgfeld C B, Luquetti D V, Gougoutas A J. et al.A phenotypic assessment tool for craniofacial microsomia. Plast Reconstr Surg. 2011;127(1):313–320. Ear Health-Related Quality of Life (HRQoL) - Patient/parent. The Ear HRQoL is free for all health care organizations, according to ICHOM. For more information see: Akter F, Mennie J C, Stewart K. et al. Patient reported outcome measures in microtia surgery. J Plast Reconstr Aesthet Surg. 2017 Mar;70(3):416-424. doi: 10.1016/j.bjps.2016.10.023. Epub 2016 Nov 23. COHIP Oral Symptoms Scale - Patient/parent: The COHIP is free for all health care organizations, according to ICHOM. For more information see: Broder HL, McGrath C, Cisneros GJ. Questionnaire development: Face validity and item impact testing of the child oral health impact profile Community Dent Oral Epidemiol 2007; 35 Suppl 1:8-19. The Standard set of ICHOM was supported by the Boston Children’s Hospital, the University Medical Center Rotterdam, the Great Ormond Street Hospital for Children and by th SickKids. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 9 itemgroups, 72 items, 1 language
Itemgroups: Administrative Data, Psychometrics and Sociometrics, Health-related Quality of Life, Behavior/Anxiety/Depression/PTSD, Airway and Breathing, Speech, Mastication and Occlusion, Oral health, Appearance
ICHOM Craniofacial Microsomia data collection Version 1.0.4 April 18th, 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 Craniofacial Microsomia, the following conditions and treatment approaches (or interventions) are covered by our Standard Set: Conditions*: Patient population defined as: 2 major criteria or 1 major + 1 minor criteria or 3+ minor criteria Major criteria: Mandibular hypoplasia | Microtia | Orbital/facial bone hypoplasia Assymetric facial movement Minor criteria: Facial soft tissue deficiency | Pre-auricular tags | Macrostomia | Clefting Epibulbar dermoids | Hemivertabrae Treatment Approaches: Plastic Surgery | Maxillofacial Surgery | Dentistry and Orthodontics | Otolaryngology |Ophthalmology | Pediatrics | Speech and Language | Psychology/Psychiatry | Nursing | Feeding/Nutrition | Audiology | Social Care | * Excluded diagnoses: Mandibulofacial dysostosis with microcephaly, Townes-Brocks Syndrome, Treacher Collins Syndrome, Auriculocondylar Syndrome, Bixler Syndrome, Branchiootorenal (BOR) Syndrome, CHARGE Syndrome, Miller Syndrome, Nager Syndrome, Oculoauriculofrontonasal Syndrome, Parry Rhomborg, Branchiooculofacial Syndromes (BOFS), isolated typical Tessier clefting (with no associated facial hypoplasia). This document contains the 22 old years Patient-reported Form. It has to be filled in when the patient is 22 years old. If the patient won't be able to fill in by himself/herself, the form can also be fill in by the parent(s). Collecting Patient-Reported Outcome Measures: Cleft Q - Patient/parent. As there is no permission for use of this questionnaire, only the subscores of each part will be included in this version of the standard set. For more information see: Klassen AF, Riff KWW, Longmire NM, et al. Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries. CMAJ. 2018;190(15):E455–E462. doi:10.1503/cmaj.170289, https://milo.mcmaster.ca/Copyrighted%20Works/questionnaires#Cleft-Q Young Person - CORE - Patient/parent. The YP-CORE is free for all health care organizations, and a license is not needed. Any organisation is free to reproduce the CORE Instruments in software, as well as on paper, under the terms of the Creative Commons Attribution-NoDerivatives 4.0 International (CC BY-ND 4.0) licence without payment of any licence fee. Hospital Anxiety and Depression Scale (HADS) – Patient. As there is no free licence for this scale, only the both two subscores (HADS Depression subscore, HADS Anxiety Suscore) will be included in this version of the standard set. Craniofacial Experiences Questionnaire (CFEQ) –Patient. The CFEQ is free for all health care organizations, and a license is not needed. For more information see: Roberts, R. M., & Shute, R. (2011). Living with a Craniofacial Condition: Development of the Craniofacial Experiences Questionnaire (CFEQ) for Adolescents and Their Parents. The Cleft Palate-Craniofacial Journal, 48(6), 727–735. PCC – Clinician. The PCC is free for all health care organizations, and a license is not needed. Intelligibility in Context Scale (ICS) - Parent/parent. The ICS is free for all health care organizations, and a license is not needed. For citation use CC 3.0 by-nc-nd. For more information see: http://www.csu.edu.au/research/multilingual-speech/ics WHO Growth Charts – Clinician. The WHO Growth Charts are free for all health care organizations, and a license is not needed. Pediatric Sleep Questionnaire (PSQ) – Parent. As a license agreement is needed for use of this questionnaire, only the total score will be includede in this version of the standard set. Distress Thermometer – Parent. As the source of the distress thermometer questions are not sure, only a text-item will be included in this version of the standard set. Phenotypic Assessment Tool (PAT-CFM) – Clinician. As a license agreement is needed for use of the PAT-CFM, only a text item is included in this version of the standard set. For more information see: Birgfeld C B, Luquetti D V, Gougoutas A J. et al.A phenotypic assessment tool for craniofacial microsomia. Plast Reconstr Surg. 2011;127(1):313–320. Ear Health-Related Quality of Life (HRQoL) - Patient/parent. The Ear HRQoL is free for all health care organizations, according to ICHOM. For more information see: Akter F, Mennie J C, Stewart K. et al. Patient reported outcome measures in microtia surgery. J Plast Reconstr Aesthet Surg. 2017 Mar;70(3):416-424. doi: 10.1016/j.bjps.2016.10.023. Epub 2016 Nov 23. COHIP Oral Symptoms Scale - Patient/parent: The COHIP is free for all health care organizations, according to ICHOM. For more information see: Broder HL, McGrath C, Cisneros GJ. Questionnaire development: Face validity and item impact testing of the child oral health impact profile Community Dent Oral Epidemiol 2007; 35 Suppl 1:8-19. The Standard set of ICHOM was supported by the Boston Children’s Hospital, the University Medical Center Rotterdam, the Great Ormond Street Hospital for Children and by th SickKids. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 9 itemgroups, 82 items, 1 language
Itemgroups: Administrative Data, Psychometrics and Sociometrics, Health-related Quality of Life, Behavior/Anxiety/Depression/PTSD, Airway and Breathing, Speech, Mastication and Occlusion, Oral health, Appearance
ICHOM Craniofacial Microsomia data collection Version 1.0.4 April 18th, 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 Craniofacial Microsomia, the following conditions and treatment approaches (or interventions) are covered by our Standard Set: Conditions*: Patient population defined as: 2 major criteria or 1 major + 1 minor criteria or 3+ minor criteria Major criteria: Mandibular hypoplasia | Microtia | Orbital/facial bone hypoplasia Assymetric facial movement Minor criteria: Facial soft tissue deficiency | Pre-auricular tags | Macrostomia | Clefting Epibulbar dermoids | Hemivertabrae Treatment Approaches: Plastic Surgery | Maxillofacial Surgery | Dentistry and Orthodontics | Otolaryngology |Ophthalmology | Pediatrics | Speech and Language | Psychology/Psychiatry | Nursing | Feeding/Nutrition | Audiology | Social Care | * Excluded diagnoses: Mandibulofacial dysostosis with microcephaly, Townes-Brocks Syndrome, Treacher Collins Syndrome, Auriculocondylar Syndrome, Bixler Syndrome, Branchiootorenal (BOR) Syndrome, CHARGE Syndrome, Miller Syndrome, Nager Syndrome, Oculoauriculofrontonasal Syndrome, Parry Rhomborg, Branchiooculofacial Syndromes (BOFS), isolated typical Tessier clefting (with no associated facial hypoplasia). This document contains the 12 old years Patient-reported Form. It has to be filled in when the patient is 12 years old. If the patient won't be able to fill in by himself/herself, the form can also be fill in by the parent(s). Collecting Patient-Reported Outcome Measures: Cleft Q - Patient/parent. As there is no permission for use of this questionnaire, only the subscores of each part will be included in this version of the standard set. For more information see: Klassen AF, Riff KWW, Longmire NM, et al. Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries. CMAJ. 2018;190(15):E455–E462. doi:10.1503/cmaj.170289, https://milo.mcmaster.ca/Copyrighted%20Works/questionnaires#Cleft-Q Young Person - CORE - Patient/parent. The YP-CORE is free for all health care organizations, and a license is not needed. Any organisation is free to reproduce the CORE Instruments in software, as well as on paper, under the terms of the Creative Commons Attribution-NoDerivatives 4.0 International (CC BY-ND 4.0) licence without payment of any licence fee. Hospital Anxiety and Depression Scale (HADS) – Patient. As there is no free licence for this scale, only the both two subscores (HADS Depression subscore, HADS Anxiety Suscore) will be included in this version of the standard set. Craniofacial Experiences Questionnaire (CFEQ) –Patient. The CFEQ is free for all health care organizations, and a license is not needed. For more information see: Roberts, R. M., & Shute, R. (2011). Living with a Craniofacial Condition: Development of the Craniofacial Experiences Questionnaire (CFEQ) for Adolescents and Their Parents. The Cleft Palate-Craniofacial Journal, 48(6), 727–735. PCC – Clinician. The PCC is free for all health care organizations, and a license is not needed. Intelligibility in Context Scale (ICS) - Parent/parent. The ICS is free for all health care organizations, and a license is not needed. For citation use CC 3.0 by-nc-nd. For more information see: http://www.csu.edu.au/research/multilingual-speech/ics WHO Growth Charts – Clinician. The WHO Growth Charts are free for all health care organizations, and a license is not needed. Pediatric Sleep Questionnaire (PSQ) – Parent. As a license agreement is needed for use of this questionnaire, only the total score will be includede in this version of the standard set. Distress Thermometer – Parent. As the source of the distress thermometer questions are not sure, only a text-item will be included in this version of the standard set. Phenotypic Assessment Tool (PAT-CFM) – Clinician. As a license agreement is needed for use of the PAT-CFM, only a text item is included in this version of the standard set. For more information see: Birgfeld C B, Luquetti D V, Gougoutas A J. et al.A phenotypic assessment tool for craniofacial microsomia. Plast Reconstr Surg. 2011;127(1):313–320. Ear Health-Related Quality of Life (HRQoL) - Patient/parent. The Ear HRQoL is free for all health care organizations, according to ICHOM. For more information see: Akter F, Mennie J C, Stewart K. et al. Patient reported outcome measures in microtia surgery. J Plast Reconstr Aesthet Surg. 2017 Mar;70(3):416-424. doi: 10.1016/j.bjps.2016.10.023. Epub 2016 Nov 23. COHIP Oral Symptoms Scale - Patient/parent: The COHIP is free for all health care organizations, according to ICHOM. For more information see: Broder HL, McGrath C, Cisneros GJ. Questionnaire development: Face validity and item impact testing of the child oral health impact profile Community Dent Oral Epidemiol 2007; 35 Suppl 1:8-19. The Standard set of ICHOM was supported by the Boston Children’s Hospital, the University Medical Center Rotterdam, the Great Ormond Street Hospital for Children and by th SickKids. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 4 itemgroups, 29 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Baseline clinical factors, Degree of health
ICHOM Breast Cancer data collection Version 1.0.1 Revised: March 30, 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 Breast Cancer, the following treatment approaches (or interventions) are covered by our Standard Set. Conditions*: All patients (men and women) with newly pathologically diagnosed invasive breast cancer (stage I-IV) and ductal carcinoma in situ (DCIS). *Excluded Conditions: Rare tumors (e.g. phyllodes tumor), lobular carcinoma in situ (LCIS) and patients with recurrent disease at baseline will be excluded. Treatment approaches: (Reconstructive) Surgery | Radiotherapy | Chemotherapy | Hormonal Therapy | Targeted Therapy | This document contains the Baseline - Patient-reported form. It has to be filled in before first doctor's visit. Collecting Patient-Reported Outcome Measures: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30, EORTC QLQ-BR23, EORTC QLQ-LMC21). As a permission is needed for use of these questionnaires, only the total score of each will be included in this version of the standard set. More information can be found at http://groups.eortc.be/qol/eortc-qlq-c30 BREAST-Q Patient Reported Outcomes Instrument (BREAST-Q). As a license is needed for use of this questionnaire, only the total score will be included in this version of the standard set. For more information, please visit: https:// eprovide.mapi-trust.org/instruments/ breast-q#contact_and_conditions_of_ use Functional Assessment of Cancer Therapy Endocrine Subscale (FACT-ES). As a permission is needed for use of this questionnaire, only the total score of each will be included in this version of the standard set. For more information see http://www.facit.org/facitorg/ questionnaires. Reference: Ong WL, Schouwenburg MG, van Bommel AC, et al. A Standard Set of Value-Based Patient-Centered Outcomes for Breast Cancer: The International Consortium for Health Outcomes Measurement (ICHOM) Initiative. JAMA Oncol. 2017;3(5):677–685. doi:10.1001/jamaoncol.2016.4851 The Standard set of ICHOM was supported by the Dutch Dnstitute for Clinical Auditing, Onderlinge Waarborgmaatschappij Centrale Zorgverzekeraars group, Ramsay Health Care and Karolinska Institute. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 6 itemgroups, 92 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Disutility of care, Symptoms, functioning and quality of life, Participation and decision making, Place of death
ICHOM Older Person data collection Version 1.0.4 Revised: July 12, 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 Older Persons, the following treatment approaches are covered by our Standard Set. Treatment approaches: These have not been defined due to the wide range of management options and interventions for an older population. A number of potentially inappropriate medications have been listed as ‘medication variables’. This document contains the Baseline and Follow-up - Patient-reported Form. It has to be filled in at Patient's entry into this set. NOTE: One Item (LEVEDC) only is scheduled for Baseline. All other Items are for both Baseline- and Follow-up-form- For Follow-up: fill in at least annually, but may be filled in more often (annually for a 69 year old person not admitted to hospital within 1 year, but 6-monthly for a 84 year old person). Collecting Patient-Reported Outcome Measures: Medical Outcomes Study: 36-Item Short Form Survey Instrument Version 1 (SF-36). RAND owns the copyright. All of the surveys and tools from RAND Health are public documents, available without charge. No further written permission is needed for use of this Health Survey. For more information see http://www. rand.org/health/surveys_tools/mos/mos_ core_36item_survey.html UCLA 3-Item Loneliness Scale. Hughes ME, Waite LJ, Hawkley LC, Cacioppo JT (2004) A short scale for measuring loneliness in large surveys: Results from two population-based studies. Res Aging 26(6):655–672. Barthel Index. The Maryland State Medical Society holds the copyright for the Barthel Index. It may be used freely for non- commercial purposes with the following citation: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Permission is required to modify the Barthel Index or to use it for commercial purposes. ASCOT Toolkit. As a license agreement is needed for use of this questionaire, the used question will not be included in this version of the standard set word-for-word. Canadian Study on Health & Aging Clinical Frailty Scale. As a permission is needed for use, the scale will not be included in this version of the standard set word-for-word. Zarit Burden Interview: A license agreement might be neccessary for use of the long version of this questionnaire, for more information: https://eprovide.mapi-trust.org/instruments/zarit-burden-interview . For the used 4-item version (Questions 2, 3, 9, 19) see: Michel Bédard, D. William Molloy, Larry Squire, Sacha Dubois, Judith A. Lever, Martin O'Donnell, The Zarit Burden Interview: A New Short Version and Screening Version, The Gerontologist, Volume 41, Issue 5, 1 October 2001, Pages 652–657, https://doi.org/10.1093/geront/41.5.652 . As license for use of this questionaire is not certain at the moment, only the total score will be included in this version of the standard set. Reference: Akpan A, Roberts C, Bandeen-Roche K, et al. Standard set of health outcome measures for older persons. BMC Geriatr. 2018;18(1):36. Published 2018 Feb 2. doi:10.1186/s12877-017-0701-3 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5797357/) The Standard set of ICHOM was supported by NHS England. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 8 itemgroups, 70 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Health status, Prior Treatment, Symptom Burden, Functioning, Recovery Speed and Health Sustainability, Other
ICHOM Depression and Anxiety data collection Version 2.3.2 Revised: August 10th, 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 Depression and Anxiety, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. This document contains the Baseline - Patient-reported Form. It has to be filled in at Baseline(Treatment begin). Condition: Depression: Major Depressive Disorder | Dysthymia | Depressive Adaptive/Adjustment Disorder | Depressive Disorder - NOS Anxiety: Generalized Anxiety Disorder | Phobic Disorder | Agoraphobia | Post-Traumatic Stress Disorder | Panic Disorder | Obsessive-Compulsive Disorder Treatment Approaches : Psychopharmacotherapy | Psychotherapy | Lifestyle Interventions | Self-Guided Help | Other Forms of Therapy Collecting Clinician and Patient-Reported Outcome Measures: PHQ-9 (Patient Health Questionnaire). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. GAD-7 (Generalized Anxiety Disorder). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. (and all other GAD or PHQ screeners); Pfizer owner, authors: Drs. Spitzer, Williams and Kroenke SPIN (Social Phobia Inventory ), MIA (Mobility Inventory for Agoraphobia), IES-R (Impact of Event Scale - Revised for Post-traumatic Stress Disorder), PDSS-SR (Panic Disorder Severity Scale), OCI-R (Obsessive-Compulsive Inventory). As permission for use has to be obtained for all of these questionnaires from the copyright holder, only the total score will be included in this version of the standard set. WHODAS 2.0 (World Health Organization Disability Assessment Schedule 2.0). As there is a license needed for use of this questionnaire, only the total score will be included in this version oft he standard set. MOS-SSS (Medical Outcomes Study: Social Support Survey). There is no license or permission needed for use. https://www.rand.org/health-care/surveys_tools/mos/social-support.html This Standard set of ICHOM was supported by the Douglas mental health university institute, Charité Universitätsmedizin Berlin, Stichting benchmark GGC. Publication: Obbarius A, van Maasakkers L, Baer L, et al. Standardization of health outcomes assessment for depression and anxiety: recommendations from the ICHOM Depression and Anxiety Working Group. Qual Life Res. 2017;26(12):3211–3225. doi:10.1007/s11136-017-1659-5 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 8 itemgroups, 69 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Health status, Prior Treatment, Symptom Burden, Functioning, Recovery Speed and Health Sustainability, Other
ICHOM Depression and Anxiety data collection Version 2.3.2 Revised: August 10th, 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 Depression and Anxiety, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. This document contains the Annual Patient-Reported Form. It has to be filled in annually. After the first year there is a more comprehensive annual evaluation. Condition: Depression: Major Depressive Disorder | Dysthymia | Depressive Adaptive/Adjustment Disorder | Depressive Disorder - NOS Anxiety: Generalized Anxiety Disorder | Phobic Disorder | Agoraphobia | Post-Traumatic Stress Disorder | Panic Disorder | Obsessive-Compulsive Disorder Treatment Approaches : Psychopharmacotherapy | Psychotherapy | Lifestyle Interventions | Self-Guided Help | Other Forms of Therapy Collecting Clinician and Patient-Reported Outcome Measures: PHQ-9 (Patient Health Questionnaire). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. GAD-7 (Generalized Anxiety Disorder). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. Pfizer owner, authors: Drs. Spitzer, Williams and Kroenke SPIN (Social Phobia Inventory ), MIA (Mobility Inventory for Agoraphobia), IES-R (Impact of Event Scale - Revised for Post-traumatic Stress Disorder), PDSS-SR (Panic Disorder Severity Scale), OCI-R (Obsessive-Compulsive Inventory). As permission for use has to be obtained for all of these questionnaires from the copyright holder, only the total score will be included in this version of the standard set. WHODAS 2.0 (World Health Organization Disability Assessment Schedule 2.0). As there is a license needed for use of this questionnaire, only the total score will be included in this version oft he standard set. MOS-SSS (Medical Outcomes Study: Social Support Survey). There is no license or permission needed for use. https://www.rand.org/health-care/surveys_tools/mos/social-support.html ICHOM's Standard set was supported by the Douglas Institut universitaire en santé mentale and mental health university institute, Charité Universitätsmedizin Berlin, Stichting benchmark GGC. Publication: Obbarius A, van Maasakkers L, Baer L, et al. Standardization of health outcomes assessment for depression and anxiety: recommendations from the ICHOM Depression and Anxiety Working Group. Qual Life Res. 2017;26(12):3211–3225. doi:10.1007/s11136-017-1659-5 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 5 itemgroups, 40 items, 1 language
Itemgroups: Administrative Data, Prior Treatment, Treatment Variables, Symptom Burden, Other
ICHOM Depression and Anxiety data collection Version 2.3.2 Revised: August 10th, 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 Depression and Anxiety, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. This document contains the Ongoing - Patient-Reported Form. It has to be filled in between Baseline and Annually form. The ongoing periode includes e.g.: Active treatment stage; Measure essential PROs ongoing with treatment (potentially at every visit) Condition: Depression: Major Depressive Disorder | Dysthymia | Depressive Adaptive/Adjustment Disorder | Depressive Disorder - NOS Anxiety: Generalized Anxiety Disorder | Phobic Disorder | Agoraphobia | Post-Traumatic Stress Disorder | Panic Disorder | Obsessive-Compulsive Disorder Treatment Approaches : Psychopharmacotherapy | Psychotherapy | Lifestyle Interventions | Self-Guided Help | Other Forms of Therapy Collecting Clinician and Patient-Reported Outcome Measures: PHQ-9 (Patient Health Questionnaire). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. GAD-7 (Generalized Anxiety Disorder). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. Pfizer owner, authors: Drs. Spitzer, Williams and Kroenke SPIN (Social Phobia Inventory ), MIA (Mobility Inventory for Agoraphobia), IES-R (Impact of Event Scale - Revised for Post-traumatic Stress Disorder), PDSS-SR (Panic Disorder Severity Scale), OCI-R (Obsessive-Compulsive Inventory). As permission for use has to be obtained for all of these questionnaires from the copyright holder, only the total score will be included in this version of the standard set. WHODAS 2.0 (World Health Organization Disability Assessment Schedule 2.0). As there is a license needed for use of this questionnaire, only the total score will be included in this version oft he standard set. MOS-SSS (Medical Outcomes Study: Social Support Survey). There is no license or permission needed for use. https://www.rand.org/health-care/surveys_tools/mos/social-support.html ICHOM's Standard set was supported by the Douglas Institut universitaire en santé mentale and mental health university institute, Charité Universitätsmedizin Berlin, Stichting benchmark GGC. Publication: Obbarius A, van Maasakkers L, Baer L, et al. Standardization of health outcomes assessment for depression and anxiety: recommendations from the ICHOM Depression and Anxiety Working Group. Qual Life Res. 2017;26(12):3211–3225. doi:10.1007/s11136-017-1659-5 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 9/20/21 - 1 form, 5 itemgroups, 18 items, 1 language
Itemgroups: Administrative data, Demographic factors, Stroke type and severity, Vascular and systemic, Treatment/care related
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 clinical 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.
- 9/20/21 - 1 form, 9 itemgroups, 32 items, 1 language
Itemgroups: Patient ID, Demographic Factors, Lifestyle and Social Factors, Treatment variables, Clinician-reported Outcomes: Chronic Complications, Patient reported Outcomes: Financial Barriers to Care, Patient reported Outcome: Psychological Well-being, Patient-reported outcomes: Diabetes Distress, Patient-reported outcomes: Depression
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 annually by the patient. If necessary (i.e. information not already on the 6-monthly clinician-reported form) please also fill in the 6-monthly patient-reported form. It is sufficient for the educational status to only be updated every 5 years. 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.