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  1. 1. Clinical Trial
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ICHOM Older Person - Baseline and Follow-up - Patient-reported

- 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.

ICHOM Overall Adult Health Data Collection - Baseline and Annual Patient form

- 12/4/20 - 1 form, 7 itemgroups, 21 items, 1 language
Itemgroups: Administrative documentation, Demographic factors, Clinical Factors, Lifestyle Factors, Seeing, Hearing, Patient-Reported Outcome Measures
ICHOM Overall Adult Health data collection Version 1.0.0 Date (downloaded on 1st April 2020) 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 Overall Adult Health, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Population: An adult (≥ 18 years) who is healthy, has well-controlled disease, or has poorly-controlled disease Excluded populations: Pediatrics (< 18 years) This document contains the Baseline and Annual Patient form. If the adult patient has any medical condition, the timepoints should be aligned with the timepoints of the respective condition standard set. (In the reference guide timeline, additional 6-monthly assessments are mentioned, but not defined further (yet)). Collecting Patient-Reported Outcome Measures: WHO (Five) Wellbeing Index (WHO5). The WHO-5 is free of charge and does not require permission to use. The scoring guide is only available upon a license agreement being made. PROMIS Scale V1.2 Global Health: As there is an official distribution site, this questionnaire will not be included in this version of the standard set. For more information see: http://www.healthmeasures.net/exploremeasurement-systems/promis/obtain-administer-measures WHO Disability Assessment Schedule 2.0 (WHO-DAS 12): As there is a license needed for use of this questionnaire, only the total score will be included in this version of the standard set. For more information see: https://www.who.int/classifications/icf/whodasii/en/ ICHOM was supported for this standard set by NSW Agency for Clinical Innovation, HCF Research Foundation, Providence St. Joseph Health and NHS Wales. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Inflammatory Arthritis - Patient-reported Form

- 4/30/20 - 1 form, 2 itemgroups, 26 items, 1 language
Itemgroups: Administrative Data, Patient-Reported Health and Wellbeing
INFLAMMATORY ARTHRITIS DATA COLLECTION Version 1.0.0 Revised: April 27 th, 2018 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: Rheumatoid Arthritis | Psoriatic Arthritis | Ankylosing Spondylitis | Juvenile Idiopathic Arthritis This ODM-file contains Patient-reported Variables to be administered at baseline visit and annually. The following scores are the ones that are integrated into the standard set. There are alternatives for each category: see questionnaire or data collection guide. PAIN: - Numerical Rating Scale (Adult/Paediatric) FATIGUE - Numerical rating Scale (Adult/Paediatric) ACTIVITY LIMITATION: - HAQ-II* (Adult): copyright FORWARD-The National Data Bank for Rheumatic Diseases, arthritis-research.org ; http://bit.ly/HAQIIIA ; Wolfe F, Michaud K, Pincus T. Development and validation of the health assessment questionnaire II: a revised version of the health assessment questionnaire. Arthritis & Rheumatism. 2004;50(10):3296-305. OVERALL EMOTIONAL AND PHYSICAL HEALTH IMPACT - Numerical rating scale (Adult/Paediatric) WORK/SCHOOL/HOUSEWORK ABILITY AND PRODUCTIVITY: - WPAI (Adult): reillyassociates.net/WPAI_General.html, they ask to inform them about publication or presentation of WPAI-data ICHOM was supported for the Inflammatory Arthritis Standard Set by Santeon, Arthritis Research UK, TiH Transparency in Healthcare, Maasstad Ziekenhuis, Karolinska Universitetssjukhuset and Sheba Academic Medical Center Hospital. Publication: Oude Voshaar MAH, Das Gupta Z, Bijlsma JWJ, et al. International Consortium for Health Outcome Measurement Set of Outcomes That Matter to People Living With Inflammatory Arthritis: Consensus From an International Working Group. Arthritis Care Res (Hoboken). 2019;71(12):1556‐1565. doi:10.1002/acr.23799 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Craniofacial Microsomia - 22 years old - Patient-reported

- 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.

ICHOM Craniofacial Microsomia - 8 years old - Patient-reported

- 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.

ICHOM Craniofacial Microsomia - 12 years old - Patient-reported

- 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.

ICHOM Pregnancy and Childbirth - 6 months postpartum - Patient reported

- 4/30/20 - 1 form, 7 itemgroups, 29 items, 1 language
Itemgroups: Administrative Data, Patient-reported health status, Breastfeeding, Role transition, Mental Health, Satisfaction with Care, Healthcare Responsiveness
ICHOM Pregnancy and Childbirth data collection Version 1.0.3 Published: 10th April 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 Pregnancy and Childbirth Standard Set of ICHOM includes outcomes to evaluate maternity care for all women during pregnancy, labor and delivery, and up to six month postpartum. ICHOMs Standard Set also includes a list of case-mix factors to allow for comparisons of outcomes across this broad patient population. Conditions: All women during: Pregnancy | Labor and delivery | Up to six months postpartum This document contains the 6 months postpartum - Patient reported Form. It has to be filled in between 22 and 26 weeks postpartum. Collecting Patient-Reported Outcome Measure: PROMIS-10. As there is an official distribution site for this questionnaire, only the total score will be included in this version of the standard set. For more information see: http://www.nihpromis.org/measures/translations International Consultation on Incontinence Questionnaire - Urinary Incontinence Short Form (ICIQ-UI SF). As permission is needed for use of this questionnaire, only the total score will be included in this version of the standard set. For more information see: http:// www.iciq.net/userpolicy.html, https://iciq.net/user-agreement Breastfeeding Self-Efficacy Scale - Short Form (BSES-SF). Free for use in clinical practice, routine outcomes measurement, and clinical research but requires permission from the developer. Please see Dennis, C-L. (2003) The Breastfeeding Self-Efficacy Scale: Psychometric assessment of the short form. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 32, 734-744. For more information see: http://www.cindyleedennis.ca/research/#1-breastfeeding Wexner Scale (Cleveland Clinic Florida Fecal Incontinence Score). Free for use. No license is required. For more information see: Table 2 of Vaizey et al. (1999) Prospective comparison of faecal incontinence grading systems. Gut 44:77-80. Original Publication: Jorge JM, Wexner SD. Etiology and management of fecal incontinence. Dis Colon Rectum. 1993 Jan;36(1):77–97. Mother-to-Infant Bonding Scale (MIBS). As license condition for use of this scale is insufficiently clarified, only the total score will be included in this version of the standard set. The complete scoring guide as well as information on clinical interpretation can be found at: http://www.ncbi.nlm.nih.gov/pubmed/15868385: Taylor, A., Atkins, R., Kumar, R. et al. Arch Womens Ment Health (2005) 8: 45. https://doi.org/10.1007/s00737-005-0074-z Patient Health Questionnaire-2 (PHQ-2). Free for use. No license is required. Scoring and clinical interpretation can be found at: http://www. cqaimh.org/pdf/tool_phq2.pdf For more information see: https://www.phqscreeners.com/ Edinburgh Postnatal Depression Scale (EPDS). Free for use. No license is required. Users may reproduce the scale without permissions provided they respect copyright by quoting the names of the authors, the title and the source of the paper in all reproduced copies. The scoring guide and clinical interpretation can be found in: Cox JL et al (1987) Detection of postnatal depression development of the 10-item Edinburgh Postnatal Depression Scale. Birth Satisfaction Scale - Revised (BSS-R). Free for use in clinical practice, routine outcomes measurement, and clinical research but requires permission from the developer. For more information see: Hollins Martin CJ et al (2014) Development and psychometric properties of the Birth Satisfaction Scale - Revised (BSS-R). Midwifery 30: 610-619 Reference: Nijagal MA, Wissig S, Stowell C, et al. Standardized outcome measures for pregnancy and childbirth, an ICHOM proposal. BMC Health Serv Res. 2018;18(1):953. Published 2018 Dec 11. doi:10.1186/s12913-018-3732-3 The Standard set of ICHOM was supported by the hoag, HCF Research Foundation, Karolinska University Hospital and the Government of South Australia. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Pregnancy and Childbirth - Birth - Patient reported

- 4/30/20 - 1 form, 4 itemgroups, 27 items, 1 language
Itemgroups: Administrative Data, Patient-reported health status, Breastfeeding, Role transition
ICHOM Pregnancy and Childbirth data collection Version 1.0.3 Published: 10th April 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 Pregnancy and Childbirth Standard Set of ICHOM includes outcomes to evaluate maternity care for all women during pregnancy, labor and delivery, and up to six month postpartum. ICHOMs Standard Set also includes a list of case-mix factors to allow for comparisons of outcomes across this broad patient population. Conditions: All women during: Pregnancy | Labor and delivery | Up to six months postpartum This document contains the Birth - Patient reported Form. It has to be filled in prior to discharge from birth unit or within 3 days postpartum. Collecting Patient-Reported Outcome Measure: PROMIS-10. As there is an official distribution site for this questionnaire, only the total score will be included in this version of the standard set. For more information see: http://www.nihpromis.org/measures/translations International Consultation on Incontinence Questionnaire - Urinary Incontinence Short Form (ICIQ-UI SF). As permission is needed for use of this questionnaire, only the total score will be included in this version of the standard set. For more information see: http:// www.iciq.net/userpolicy.html, https://iciq.net/user-agreement Breastfeeding Self-Efficacy Scale - Short Form (BSES-SF). Free for use in clinical practice, routine outcomes measurement, and clinical research but requires permission from the developer. Please see Dennis, C-L. (2003) The Breastfeeding Self-Efficacy Scale: Psychometric assessment of the short form. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 32, 734-744. For more information see: http://www.cindyleedennis.ca/research/#1-breastfeeding Wexner Scale (Cleveland Clinic Florida Fecal Incontinence Score). Free for use. No license is required. For more information see: Table 2 of Vaizey et al. (1999) Prospective comparison of faecal incontinence grading systems. Gut 44:77-80. Original Publication: Jorge JM, Wexner SD. Etiology and management of fecal incontinence. Dis Colon Rectum. 1993 Jan;36(1):77–97. Mother-to-Infant Bonding Scale (MIBS). As license condition for use of this scale is insufficiently clarified, only the total score will be included in this version of the standard set. The complete scoring guide as well as information on clinical interpretation can be found at: http://www.ncbi.nlm.nih.gov/pubmed/15868385: Taylor, A., Atkins, R., Kumar, R. et al. Arch Womens Ment Health (2005) 8: 45. https://doi.org/10.1007/s00737-005-0074-z Patient Health Questionnaire-2 (PHQ-2). Free for use. No license is required. Scoring and clinical interpretation can be found at: http://www. cqaimh.org/pdf/tool_phq2.pdf For more information see: https://www.phqscreeners.com/ Edinburgh Postnatal Depression Scale (EPDS). Free for use. No license is required. Users may reproduce the scale without permissions provided they respect copyright by quoting the names of the authors, the title and the source of the paper in all reproduced copies. The scoring guide and clinical interpretation can be found in: Cox JL et al (1987) Detection of postnatal depression development of the 10-item Edinburgh Postnatal Depression Scale. Birth Satisfaction Scale - Revised (BSS-R). Free for use in clinical practice, routine outcomes measurement, and clinical research but requires permission from the developer. For more information see: Hollins Martin CJ et al (2014) Development and psychometric properties of the Birth Satisfaction Scale - Revised (BSS-R). Midwifery 30: 610-619 Reference: Nijagal MA, Wissig S, Stowell C, et al. Standardized outcome measures for pregnancy and childbirth, an ICHOM proposal. BMC Health Serv Res. 2018;18(1):953. Published 2018 Dec 11. doi:10.1186/s12913-018-3732-3 The Standard set of ICHOM was supported by the hoag, HCF Research Foundation, Karolinska University Hospital and the Government of South Australia. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Congenital Upper Limb Anomalies - Follow-up, 8, 12, 15, 16-18 years - Patient Form

- 4/30/20 - 1 form, 2 itemgroups, 13 items, 1 language
Itemgroups: Administrative Data, Degree of Health
ICHOM Congenital Upper Limb Anomalies data collection Version 1.0.0 August 31st, 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 Congenital Upper Limb Anomalies, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Congenital Hand Anomaly | Congenital Upper Limb Anomaly | Apert | Cleft Hand | Constriction Ring | Polydactyly | Radial Ray Deficiency | Symbrachydactyly | Thumb Hypoplasia | Ulnar Dysplasia | Ulnar Ray Deficiency Treatment approaches: Surgery | Rehabilitation | Other This document contains the Follow-up, 8, 12, 15, 16-18 years - Patient Form. It has to be filled in 8, 12, 15, 16-18 years after Patient's entry into set. If the patient is unable to respond to the questionnaires, please let the parent fill in the parent reported follow-up form. Collecting Patient-Reported Outcome Measures: Joint Mobility Questions. There are no licensing requirements to use these questions. PROMIS Upper Extremity, Global Health, Peer relationships, Anxiety, Depression. As there is an official distribution site, these questionnaires will not be included in this version of the standard set. For more information see: http://www.healthmeasures.net/exploremeasurement-systems/promis/obtain-administer-measures Goniometry, Dynamometry for Clinician. Follow the clinical assessment recommendations of the American Dynamometry - Clinician Society of Hand Therapists. Manual Muscle Strength Testing – Clinician. Use the Medical Research Council MMST grading. Oberg-Manske-Tonkin Classification. For more information see: Oberg KC, Feenstra JM, Manske PR, et al. Developmental biology and classification of congenital anomalies of the hand and upper extremity. J Hand Surg Am. 2010;35:2066. The Standard set of ICHOM was supported by the Great Ormond Stres Hospital, the Boston Children’s Hospital, the Erasmus MC, the Royal North Shore Hospital, the Texas Scottish Rite Hospital and the Loma Linda University. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Pregnancy and Childbirth - Entry to prenatal care - Patient-reported Form

- 4/30/20 - 1 form, 6 itemgroups, 31 items, 1 language
Itemgroups: Administrative Data, Demographic, Obstetric and medical history, Patient-reported health status, Role transition, Mental Health
ICHOM Pregnancy and Childbirth data collection Version 1.0.3 Published: 10th April 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 Pregnancy and Childbirth Standard Set of ICHOM includes outcomes to evaluate maternity care for all women during pregnancy, labor and delivery, and up to six month postpartum. ICHOMs Standard Set also includes a list of case-mix factors to allow for comparisons of outcomes across this broad patient population. Conditions: All women during: Pregnancy | Labor and delivery | Up to six months postpartum This document contains the Entry to prenatal care - Patient-reported Form. Data collection begins when a woman enters prenatal care. In many cases this is within the first trimester but may be considerably later in some care systems. If entry to prenatal care occurs close to or within the 3rd trimester, ICHOM recommend combining the documents "Entry to prenatal care" and "3rd trimester". In the case of a loss or termination of the pregnancy prior to 20 weeks but after the beginning of data collection, no further data collection should be pursued. Collecting Patient-Reported Outcome Measure: PROMIS-10. As there is an official distribution site for this questionnaire, only the total score will be included in this version of the standard set. For more information see: http://www.nihpromis.org/measures/translations International Consultation on Incontinence Questionnaire - Urinary Incontinence Short Form (ICIQ-UI SF). As permission is needed for use of this questionnaire, only the total score will be included in this version of the standard set. For more information see: http:// www.iciq.net/userpolicy.html, https://iciq.net/user-agreement Breastfeeding Self-Efficacy Scale - Short Form (BSES-SF). Free for use in clinical practice, routine outcomes measurement, and clinical research but requires permission from the developer. Please see Dennis, C-L. (2003) The Breastfeeding Self-Efficacy Scale: Psychometric assessment of the short form. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 32, 734-744. For more information see: http://www.cindyleedennis.ca/research/#1-breastfeeding Wexner Scale (Cleveland Clinic Florida Fecal Incontinence Score). Free for use. No license is required. For more information see: Table 2 of Vaizey et al. (1999) Prospective comparison of faecal incontinence grading systems. Gut 44:77-80. Original Publication: Jorge JM, Wexner SD. Etiology and management of fecal incontinence. Dis Colon Rectum. 1993 Jan;36(1):77–97. Mother-to-Infant Bonding Scale (MIBS). As license condition for use of this scale is insufficiently clarified, only the total score will be included in this version of the standard set. The complete scoring guide as well as information on clinical interpretation can be found at: http://www.ncbi.nlm.nih.gov/pubmed/15868385: Taylor, A., Atkins, R., Kumar, R. et al. Arch Womens Ment Health (2005) 8: 45. https://doi.org/10.1007/s00737-005-0074-z Patient Health Questionnaire-2 (PHQ-2). Free for use. No license is required. Scoring and clinical interpretation can be found at: http://www. cqaimh.org/pdf/tool_phq2.pdf For more information see: https://www.phqscreeners.com/ Edinburgh Postnatal Depression Scale (EPDS). Free for use. No license is required. Users may reproduce the scale without permissions provided they respect copyright by quoting the names of the authors, the title and the source of the paper in all reproduced copies. The scoring guide and clinical interpretation can be found in: Cox JL et al (1987) Detection of postnatal depression development of the 10-item Edinburgh Postnatal Depression Scale. Birth Satisfaction Scale - Revised (BSS-R). Free for use in clinical practice, routine outcomes measurement, and clinical research but requires permission from the developer. For more information see: Hollins Martin CJ et al (2014) Development and psychometric properties of the Birth Satisfaction Scale - Revised (BSS-R). Midwifery 30: 610-619 Reference: Nijagal MA, Wissig S, Stowell C, et al. Standardized outcome measures for pregnancy and childbirth, an ICHOM proposal. BMC Health Serv Res. 2018;18(1):953. Published 2018 Dec 11. doi:10.1186/s12913-018-3732-3 The Standard set of ICHOM was supported by the hoag, HCF Research Foundation, Karolinska University Hospital and the Government of South Australia. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Hypertension in low- and middle-income countries - Annually - Patient-reported

- 4/30/20 - 1 form, 3 itemgroups, 25 items, 1 language
Itemgroups: Administrative Data, Clinical Factors, Patient-reported health status
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 Annually - Patient-reported form. It has to be filled in 1 year after patient's entry into set as well as annually 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.

ICHOM Hypertension in low- and middle-income countries - Baseline - Patient-reported

- 4/30/20 - 1 form, 4 itemgroups, 26 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Clinical Factors, Patient-reported health status
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 Baseline - Patient-reported form. It has to be filled in for patient's entry into study. 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.

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