ID

38358

Description

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/ 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 - Parent Form. This form is for situations in which the patient is unable to respond to PROMIS CPGH7 (found in the patient reported follow-up form). It has to be filled in at 6, 8, 12, and 15 years of age. Additionally it has to be filled in at the end of pediatric care, if the patient is still under 18 years of age (If he/she is 18 years or older at that point, please fill in the PROMIS Global Health 10 instead). 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.

Link

http://www.ichom.org/

Keywords

Versions (2)
  1. 10/12/19 10/12/19 -
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

October 12, 2019

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License

Creative Commons BY-NC 3.0
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ICHOM Congenital Upper Limb Anomalies

English

Follow-up - Parent Form

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Description

This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

Data type

text

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline
Description

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Degree of Health
Description

Degree of Health

Alias
UMLS CUI-1
C0018759
PROMIS Paediatric Global health - General health, total score
Description

As there is an official distribution site, the actual 7 questions of this questionnaire are not part in this version of the standard set. The ICHOM OIDs are: PROMIS-PPGH7_Q01 to PROMIS-PPGH7_Q07. Supporting definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0600420
UMLS CUI [1,2]
C3693645
UMLS CUI [1,3]
C0030755
UMLS CUI [1,4]
C2964552
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Similar models

Follow-up - Parent Form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
text
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Degree of Health
C0018759 (UMLS CUI-1)
PROMIS Paediatric Global health - General health, total score
Item
PROMIS Paediatric Global health - General health, total score
integer
C0600420 (UMLS CUI [1,1])
C3693645 (UMLS CUI [1,2])
C0030755 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
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