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

You must log in to select data models for download or further analysis.

87 Search results.

WHO-5 - WHO (Five) Well-Being Index

- 9/9/21 - 1 form, 1 itemgroup, 5 items, 30 languages
Itemgroup: Over the last two weeks
WHO (Five) Well-Being Index (1998 version) http://www.who-5.org Also called : WHO Five, WHO 5

SF-36 (RAND)

- 9/17/21 - 1 form, 7 itemgroups, 36 items, 1 language
Itemgroups: General Info, Current health limitations, Physical Health related problems during past 4 weeks, Emotional problems during past 4 weeks, Past 4 weeks, Emotions in past 4 weeks, General statements
This document contains the 36-Item Short Form Survey Instrument Version 1 (SF-36) form, developed at RAND as part of the Medical Outcomes Study. RAND owns the copyright. All of the surveys and tools from RAND Health are public documents, available without charge. For more information - e.g. on terms and conditions for use or scoring instructions: https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form.html Changes made to the questionnaire should be made clearly identifiable.

ICHOM Macular Degeneration

- 9/17/21 - 1 form, 10 itemgroups, 47 items, 1 language
Itemgroups: Demographics, Physical examination visual acuity, clinical status, Medical History, Therapy eye, Treatment, treatment burden, Therapy complications, Disease activity, health related quality of life Vision Screening
MACULAR DEGENERATION DATA COLLECTION Version 3.0.1 Revised: April 10th, 2017, International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Conditions: Neovascular Macular Degeneration Neovascular Age Related Macular Degeneration | Polypoidal Choroidal Vasculopathy | Myopic Neovascular Macular Degeneration | Other Forms of Neovascular Macular Degeneration (includes Post-Traumatic, Inflammatory, Idiopathic, Macular Telangiectasia Type 2) Non-Neovascular Age Related Macular Degeneration Treatment Approaches: Intravitreal anti-VEGF treatment | Other intravitreal treatment | Photodynamic therapy | Thermal laser photocoagulation | Retinal radiation therapy | Transpupillary thermotherapy | Retinal surgical treatment Questionnaires used in this form: Brief IVI

Safety & Immunogenicity of two GSK Biologicals' Candidate Malaria Vaccines in young children, NCT00307021 - Diary Card for General and Local Symptoms

- 8/24/21 - 1 form, 10 itemgroups, 37 items, 1 language
Itemgroups: Administrative, Local Symptoms (at Injection Sites), Local Symptoms (at Injection Site), Other Local Symptoms, Pharmaceutical preparation, General Symptoms, General Symptoms, General Symptoms, Other General Symptoms, Administrative
Study ID: 105874 Clinical Study ID: 105874 Study Title: Bridging Safety & Immunogenicity Study of GSK Biologicals' Candidate Malaria Vaccine RTS,S/AS01E (0.5 mL Dose) to RTS,S/AS02D (0.5 mL Dose) Administered IM According to a 0, 1, 2-Month Schedule in Gabonese Children Aged 18 Months to 4 Years Patient Level Data: Study Listed on ClinicalStudyDataRequest.com Clinicaltrials.gov Identifier: NCT00307021 Sponsor: GlaxoSmithKline Collaborators: N/A Phase: Phase 2 Study Recruitment Status: Completed Generic Name: GSK Biologicals' candidate Plasmodium falciparum malaria vaccine 257049 Trade Name: N/A Study Indication: Malaria ODM derived from https://clinicaltrials.gov/ct2/show/NCT00307021. A Phase II randomized, double-blind bridging study of the safety and immunogenicity of GlaxoSmithKline Plasmodium falciparum malaria vaccine RTS,S/AS01E (0.5 mL dose) to RTS,S/AS02D (0.5 mL dose) administered IM according to a 0, 1, 2- month vaccination schedule in children aged 18 months to 4 years living in Gabon. Clinical Visits: This study has a total of 7 visits. Visit 1 = Screening, Visits 2-6 are during the double-blind phase (Month 0-3) and Visit 7 is during the single-blind phase (Month 4-14). Vaccine administration takes place during visits 2, 4, and 5 (Visit 2 = Dose 1; Visit 4 = Dose 2; Visit 5 = Dose 3). Field-worker Visits: During the double-blind phase, clinical visits are accompanied by daily field-worker visits subsequent to each vaccine administration visit. Additional field-worker visits also take place during months 4 to 13 of the single-blind phase. Parents/guardians are asked to fill in the Diary Card during the one-week period subsequent to each vaccination (i.e., post visit 2 [dose 1], visit 4 [dose 2], and visit 5 [dose 3]). Note that informed consent has to be obtained prior to any study procedure.

Efficacy of P. Falciparum Vaccine Against Malaria in Children NCT00380393 - Diary Card for General and Local Symptoms

- 8/11/21 - 1 form, 10 itemgroups, 37 items, 1 language
Itemgroups: Administrative, Local Symptoms (at Injection Site), Local Symptoms (at Injection Site), Other Local Symptoms, Pharmaceutical preparation, General Symptoms, General Symptoms, General Symptoms, Other General Symptoms, Administrative
Study ID: 106464 Clinical Study ID: 106464 Study Title: A Study of the Efficacy Against Episodes of Clinical Malaria Due to P. Falciparum Infection of GSK Biologicals Candidate Vaccine RTS, S/AS01, Administered According to a 0,1,2-months Schedule in Children Aged 5 to 17 Months Living in Tanzania & Kenya Patient Level Data: Study Listed on ClinicalStudyDataRequest.com Clinicaltrials.gov Identifier: NCT00380393 Sponsor: GlaxoSmithKline Collaborators: N/A Phase: Phase 2 Study Recruitment Status: Completed Generic Name: GSK malaria vaccine 257049 Vaccine, Sanofi-Pasteur's Human Diploid Cell Rabies Vaccine Trade Name: N/A Study Indication: Malaria ODM derived from https://clinicaltrials.gov/ct2/show/study/NCT00380393. This Phase IIb randomized, double-blind, controlled study of the efficacy against episodes of clinical malaria due to Plasmodium falciparum infection of GlaxoSmithKline Biologicals’ candidate vaccine RTS, S/AS01E, administered IM according to a 0, 1, 2-month vaccination schedule in children aged 5 months to 17 months living in Tanzania and Kenya. This study includes the following 7 clinical study visits (3 different visit types) during a double-blind phase (Day -60 to Month 6 1/2) and a single-blind phase including an extension for a subset of patients (month 7 to month 14). Clinical visit 1: Baseline visit, screening, and randomisation (DAY -60 to 0) Clinical visit 2: Vaccination I (MONTH 0, DAY 0 | DOSE 1 | 0 - 60 DAYS AFTER VISIT 1) Clinical visit 3: Vaccination II (MONTH 1, DAY 30 | DOSE 2 | 21 - 35 DAYS AFTER VISIT 2) Clinical visit 4: Vaccination III (MONTH 2, DAY 60 | DOSE 3 | 21 - 35 DAYS AFTER VISIT 3) Clinical visit 5: Blood Sample, ACD (MONTH 3, DAY 90 | 21 - 42 DAYS AFTER VISIT 4) Clinical visit 6: Blood Sample, ACD (MONTH 6 1/2 | CROSS-SECTIONAL VISIT FOR ACD | FINAL STUDY VISIT FOR DOUBLE-BLIND PHASE) Clinical visit 7: Blood Sample, ACD (MONTH 14 | FINAL STUDY VISIT SINGLE-BLIND PHASE) Field-worker home visits: During the vaccination period, clinical visits are accompanied by daily field-worker visits for a one-week period subsequent to each vaccine administration at clinical visits 2, 3, and 4 (visit code 21-26 following clinical visit 2; visit code 27-32 following clinical visit 3; visit code 33-38 following clinical visit 4). After completion of the vaccination period, clinical visits are then accompanied by weekly field-worker home visits (visit code 39-40 following clinical visit 4/dose 3; visit code 41-55 following clinical visit 5; visit code 56-86 following clinical visit 6). These visits serve the additional purpose of Active Case Detection (ACD). Passive Case Detection (PCD) for clinical malaria disease is performed both during the course of the double-blind (day -60 to month 6 1/2) and the single-blind phase (month 7 to month 14). Parents/guardians are asked to fill in the Diary Card during the one-week period subsequent to each vaccination (i.e., post visit 2 [dose 1], visit 3 [dose 2], and visit 4 [dose 3]). Note that informed consent has to be obtained prior to any study procedure.

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.

Measurement Instrument Database for the Social Science (MIDSS) - Appraisal of Diabetes Scale (ADS)

- 9/13/20 - 1 form, 1 itemgroup, 7 items, 1 language
Itemgroup: DCAI-R (7/88)
Carey, M. P., Jorgensen, R. S., Weinstock, R. S., Sprafkin, R. P., Lantinga, L. J., Carnrike, C. L. M., Jr., Baker, M. T., & Meisler, A. W. (1991). Appraisal of Diabetes Scale (ADS). Measurement Instrument Database for the Social Science. Retrieved 13.09.20, from www.midss.ie Key references: Carey, M. P., Jorgensen, R. S., Weinstock, R. S., Sprafkin, R. P., Lantinga, L. J., Carnrike, C. L. M., Jr., Baker, M. T., & Meisler, A. W. (1991). Reliability and validity of the appraisal of diabetes scale. Journal of Behavioral Medicine, 14, 43-51. Garratt, A.M., L. Schmidt, and R. Fitzpatrick (2002) Patient-assessed health outcome measures for diabetes: a structured review. Diabetic Med., 19, 1-11. Trief, P.M., W. Grant, K. Elbert, and R.S. Weinstock (1998) Family environment, glycemic control, and the psychosocial adaptation of adults with diabetes. Diabetes Care 21, 241-245. Trief, P.M., C. Aquilino, K. Paradies, and R.S. Weinstock (1999) Impact of the work environment on glycemic control and adaptation to diabetes. Diabetes Care 22, 569-574. Primary use / Purpose: The Appraisal of Diabetes Scale (ADS) is a 7-item self-report scale assessing the individual's appraisal of his or her diabetes. Respondents rate each statement on a 5 point Likert scale. The scale's author state that the ADS can be incisive as a relatively quick (5 minute) screening tool to examine a patient’s adjustment to diabetes or risk for noncompliance with a care regimen. The test is easily administered (written or oral form) and is simple to score and interpret. The smaller the total score, the more positive the appraisal strategy. Thus, lower scores are better. Background: The Appraisal of Diabetes Scale (ADS) was developed and tested with 200 male subjects, two thirds of whom were taking insulin treatment with an mean age of 58 years. All subjects provided blood for routine monitoring of HbA1c, half the subjects completed the ADS as well as five other self-report measures, and the other half completed the ADS on three time points over the course of one week. No significant difference was observed between ADS scores for insulin-dependent and non-insulin-dependent subjects. The ADS has been used in studies parsing the effects of family environment (Trief et al. 1998) and work environment (Trief et al. 1999) on glycemic control and psychosocial adaptation in adults with diabetes. Psychometrics: The psychometric properties of the ADS are examined in Carey et al. (1991). Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.274 Scoring the ADS is easy: 1. Reverse score items # 2 and 6. ADS2R = 5 - ADS2 ADS6R = 5 - ADS6 2. Then sum all items, using the reversed scored items 2 and 6. Total score = ADS1 + ADSR2 + ADS3 + ADS4 + ADS5 + ADSR6 + ADS7 There is no manual. Interpretation is straightforward: The smaller the total score, the more positive the appraisal strategy. Thus, lower scores are better.

CATQUEST 9SF

- 5/28/20 - 1 form, 3 itemgroups, 21 items, 6 languages
Itemgroups: Administrative Data, Questionnaire Number, Questionnaire
9 Question Short Form of CATQUEST: questionnaire for use in cataract surgery care To be used prior to and 3 months after cataract surgery. Forms used for ODM-files available for download from http://www.eurequo.org/category/downloads/catquest . With Permission from Mats Lundström (free to use, with no license demands). Publications: original Swedish (long) Version: Lundström M, Stenevi U, Thorburn W, Roos P. Catquest questionnaire for use in cataract surgery care: assessment of surgical outcomes. J Cataract Refract Surg. 1998 Jul;24(7):968-74. Swedish Short Form: Lundström M, Pesudovs K. Catquest-9SF patient outcomes questionnaire: nine-item short-form Rasch-scaled revision of the Catquest questionnaire. J Cataract Refract Surg. 2009 Mar;35(3):504-13. doi: 10.1016/j.jcrs.2008.11.038. English Translation (Australia): Gothwal VK1, Wright TA, Lamoureux EL, Lundström M, Pesudovs K. Catquest questionnaire: re-validation in an Australian cataract population. Clin Exp Ophthalmol. 2009 Nov;37(8):785-94. doi: 10.1111/j.1442-9071.2009.02133.x. German Translation: K. Gerstmeyer, A. Harrer, N. Hirnschall, K. Pesudovs, M. Lundstrom, O. Findl: Validierung der deutschen Version des schwedischen Catquest-9SF-Fragebogens. 2012, DGII Jahresband 2012, p. 214-222 Italian Translation: Skiadaresi E, Ravalico G, Polizzi S, Lundström M, González-Andrades M, McAlinden C. The Italian Catquest-9SF cataract questionnaire: translation, validation and application. Eye Vis (Lond). 2016 Apr 28;3:12. doi: 10.1186/s40662-016-0043-9. eCollection 2016. Spanish Translation: Lundström M, Llovet F, Llovet A, Martinez Del Pozo M, Mompean B, González JV, Pesudovs K. Validation of the Spanish Catquest-9SF in patients with a monofocal or trifocal intraocular lens. J Cataract Refract Surg. 2016 Dec;42(12):1791-1796. doi: 10.1016/j.jcrs.2016.10.011. Dutch Tranlsation (to be added): Visser MS, Dieleman M, Klijn S, Timman R, Lundström M, Busschbach JJ, Reus NJ. Validation, test-retest reliability and norm scores for the Dutch Catquest-9SF. Acta Ophthalmol. 2017 May;95(3):312-319. doi: 10.1111/aos.13287. Epub 2016 Oct 24.

ICHOM Craniofacial Microsomia - 8 years old - Patient-reported

- 4/30/20 - 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 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 Congenital Upper Limb Anomalies - Follow-up 6 years - Patient Form

- 4/30/20 - 1 form, 2 itemgroups, 9 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 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.

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.