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  1. 1. Klinische studie
  2. 2. Routinedocumentatie
  3. 3. Register-/kohortstudies
  4. 4. Kwaliteitswaarborging
  5. 5. Datastandaard
  6. 6. Patiëntenvragenlijst
  7. 7. Medisch vakgebied
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- 30-04-20 - 1 formulario, 7 itemgroups, 15 items, 1 idioma
Itemgroups: Administrative Data, Patient characteristics, Family characteristics and community environment, Hearing, Speech, 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 5 and 12 years old patient - Clinical-reported Form. It has to be filled in when the patient is 5 and 12 years old. 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.
- 30-04-20 - 1 formulario, 6 itemgroups, 9 items, 1 idioma
Itemgroups: Administrative Data, Patient characteristics, Family characteristics and community environment, Hearing, Speech, 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 years old patient - Clinical-reported Form. It has to be filled in when the patient is 22 years old. 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.
- 30-04-20 - 1 formulario, 5 itemgroups, 8 items, 1 idioma
Itemgroups: Administrative Data, Patient characteristics, Family characteristics and community environment, Speech, 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 - Clinical-reported Form. It has to be filled in when the patient is 8 years old. 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.
- 30-04-20 - 1 formulario, 6 itemgroups, 31 items, 1 idioma
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.
- 30-04-20 - 1 formulario, 7 itemgroups, 21 items, 1 idioma
Itemgroups: Administrative Data, Demographic, Obstetric and medical history, Treatment variables, Survival, Severe maternal morbidity, Neonatal morbidity
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 Postnatal checkup - Administrative Data Form. It is the 1st postnatal checkup and has to be filled in between 2 and 8 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.
- 30-04-20 - 1 formulario, 8 itemgroups, 55 items, 1 idioma
Itemgroups: Administrative Data, Patient-reported health status, Breastfeeding, Role transition, Mental Health, Satisfaction with Care, Healthcare Responsiveness, Birth Experience
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 Postpartum checkup - Patient reported Form. It has to be filled between 2 and 8 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.
- 30-04-20 - 1 formulario, 7 itemgroups, 29 items, 1 idioma
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.
- 30-04-20 - 1 formulario, 4 itemgroups, 27 items, 1 idioma
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.
- 30-04-20 - 1 formulario, 2 itemgroups, 13 items, 1 idioma
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.
- 30-04-20 - 1 formulario, 4 itemgroups, 23 items, 1 idioma
Itemgroups: Administrative Data, Patient characteristics, Family characteristics and community environment, Hearing
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 2 years old patient - Clinical-reported Form. It has to be filled in when the patient is 2 years old. Collecting Patient-Reported Outcome Measures: Cleft Q - Patient/parent. As there is a 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 included 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 will be 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.
- 30-04-20 - 1 formulario, 5 itemgroups, 38 items, 1 idioma
Itemgroups: Administrative Data, Clinical status, Burden of Care to Patient, Degree of Health, Degree of health - Goniometrie
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 Recognising that different countries have established practices and may take time to transition to these time points, ICHOM has agreed age categories for measurement that fit around the recommended specific ages: 6 months: +/- 1 month 1 year: +/- 1 month 2 years: +/- 1 month 8 years: 8-9 years 12 years: 11 - 13 years 15 years: 14 - 15 years End of Paediatric Care: 16 - 18 years (according to the policy of each institution for end of paediatric care) Post-operative period: up to 6 months following the date of the operation This document contains the Follow-up, 6 months, 1 and 2 years - Clinical Form. It has to be filled in 6 months, 1 and 2 years after Patient's entry into set. Note: the goniometrie only has to be filled in for one/two years old children. 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.
- 30-04-20 - 1 formulario, 2 itemgroups, 9 items, 1 idioma
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 6 years - Patient Form. It has to be filled in 6 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.

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