ID

28097

Description

Child and Adolescent Habilitation (cerebral palsy) Swedish National Quality Registry Source: https://old.liu.se/habq/habq-formular-cp?l=sv Registry owner:Gunilla Rydberg, HabQ, Region Skåne, Child and youth rehabilitation, Skåne University Hospital (SUS), 205 02 Malmö gunilla.rydberg@skane.se Copyright:old.liu.se (habq) 3 year follow up Health monitoring of children and adolescents with Cerebral Palsy

Link

https://old.liu.se/habq/habq-formular-cp?l=sv

Keywords

Versions (1)
  1. 12/18/17 12/18/17 -
Copyright Holder

old.liu.se (habq)

Uploaded on

December 18, 2017

DOI

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License

Creative Commons BY-NC 3.0
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Child and Adolescent Habilitation (cerebral palsy) Swedish National Quality Registry

English ( localization.languageCode.US ) Swedish

3 year follow up Health monitoring of children and adolescents with Cerebral Palsy

1 forms  
3 year follow up Health monitoring of children and adolescents with Cerebral Palsy
Description

3 year follow up Health monitoring of children and adolescents with Cerebral Palsy

Alias
UMLS CUI-1
C0007789
UMLS CUI-2
C1522577
UMLS CUI-3
C0017313
UMLS CUI-4
C0030695
Study ID
Description

Study ID

Data type

text

Alias
UMLS CUI [1]
C2348585
name
Description

name

Data type

text

Alias
UMLS CUI [1]
C0027365
ID-nr Compos
Description

ID-nr Compos

Data type

text

rehabilitation unit
Description

rehabilitation unit

Data type

text

Alias
UMLS CUI [1,1]
C0018704
UMLS CUI [1,2]
C0034991
UMLS CUI [1,3]
C1549700
Demography
Description

Demography

Alias
UMLS CUI-1
C0011298
UMLS CUI-2
C1955348
Date of data collection
Description

Date of data collection

Data type

date

Alias
UMLS CUI [1,1]
C0010995
UMLS CUI [1,2]
C0011008
Interpreters were used in data collection
Description

Interpreters were used in data collection

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0010995
Family, Mother is biological parent
Description

Family, Mother is biological parent

Data type

boolean

Alias
UMLS CUI [1,1]
C0026591
UMLS CUI [1,2]
C0337465
Year of birth mother
Description

Year of birth mother

Data type

integer

Alias
UMLS CUI [1]
C2319404
Family, Father is biological parent
Description

Family, Father is biological parent

Data type

boolean

Alias
UMLS CUI [1,1]
C0015671
UMLS CUI [1,2]
C0337465
Year of birth father
Description

Year of birth father

Data type

integer

Alias
UMLS CUI [1]
C2136977
Mother is born in another country
Description

Mother is born in another country

Data type

boolean

Alias
UMLS CUI [1,1]
C1300001
UMLS CUI [1,2]
C0026591
Mother immigrated from
Description

Mother immigrated from

Data type

text

Alias
UMLS CUI [1,1]
C0026591
UMLS CUI [1,2]
C0020942
UMLS CUI [1,3]
C0454664
Mother came to Sweden year
Description

Mother came to Sweden year

Data type

integer

Alias
UMLS CUI [1,1]
C0020942
UMLS CUI [1,2]
C0038995
UMLS CUI [1,3]
C0026591
Mother needs an interpreter
Description

Mother needs an interpreter

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0026591
The father was born in another country
Description

The father was born in another country

Data type

boolean

Alias
UMLS CUI [1,1]
C1300001
UMLS CUI [1,2]
C0015671
The father immigrated from
Description

The father immigrated from

Data type

text

Alias
UMLS CUI [1,1]
C0015671
UMLS CUI [1,2]
C0020942
UMLS CUI [1,3]
C0454664
The father came to Sweden year
Description

The father came to Sweden year

Data type

integer

Alias
UMLS CUI [1,1]
C0020942
UMLS CUI [1,2]
C0038995
UMLS CUI [1,3]
C0015671
The father needs an interpreter
Description

The father needs an interpreter

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0015671
The child lives with
Description

The child lives with

Data type

integer

Alias
UMLS CUI [1]
C2184149
Other accommodation
Description

Other accommodation

Data type

text

Alias
UMLS CUI [1]
C2184149
Sibling
Description

Sibling

Data type

boolean

Alias
UMLS CUI [1]
C0037047
Sibling's birth year
Description

Sibling's birth year

Data type

integer

Alias
UMLS CUI [1,1]
C0037047
UMLS CUI [1,2]
C2826771
Community Outreach
Description

Community Outreach

Alias
UMLS CUI-1
C0009482
UMLS CUI-2
C0037438
UMLS CUI-3
C1521721
Social support, Care contribution
Description

Social support, Care contribution

Data type

boolean

Alias
UMLS CUI [1]
C0037438
How much care allowance
Description

care allowance

Data type

integer

Alias
UMLS CUI [1,1]
C0017313
UMLS CUI [1,2]
C0556660
Actions according to SoL
Description

Actions according to SoL

Data type

boolean

What actions according to SoL
Description

What actions according to SoL

Data type

text

Actions according to LSS 9§
Description

Actions according to LSS 9§

Data type

boolean

If yes, check which ones Advice and other personal support
Description

Advice and other personal support

Data type

boolean

Alias
UMLS CUI [1]
C1521721
Personal Assistant
Description

Personal Assistant

Data type

boolean

Alias
UMLS CUI [1]
C0401893
Personal Assistant Number of hours / week
Description

Personal Assistant Number of hours / week

Data type

integer

Alias
UMLS CUI [1]
C0401893
Attendant Service
Description

Attendant Service

Data type

boolean

Alias
UMLS CUI [1,1]
C0554205
UMLS CUI [1,2]
C1521721
Contact
Description

Contact

Data type

boolean

Alias
UMLS CUI [1,1]
C0337611
UMLS CUI [1,2]
C1521721
Relief service at home
Description

Relief service at home

Data type

boolean

Alias
UMLS CUI [1,1]
C1521721
UMLS CUI [1,2]
C0442519
Short-term stay outside of home
Description

Short-term stay outside of home

Data type

boolean

Alias
UMLS CUI [1,1]
C0034993
UMLS CUI [1,2]
C0023303
Short-term supervision for schoolchildren over 12 years
Description

Short-term supervision for schoolchildren over 12 years

Data type

boolean

Alias
UMLS CUI [1,1]
C0038842
UMLS CUI [1,2]
C0008059
Accommodation in a family home or in a residence with special service for children and adolescents
Description

Accommodation

Data type

boolean

Alias
UMLS CUI [1]
C0595920
Personal assistance according to LASS
Description

Personal assistance according to LASS

Data type

boolean

Alias
UMLS CUI [1]
C1521721
Number of hours / week personal assistant according to LASS
Description

Number of hours / week personal assistant according to LASS

Data type

integer

Alias
UMLS CUI [1]
C1521721
Coordinated plan according to SOFS§2008: 20
Description

Coordinated plan according to SOFS§2008: 20

Data type

boolean

Alias
UMLS CUI [1,1]
C0178916
UMLS CUI [1,2]
C1521721
Transportation service
Description

Transportation service

Data type

boolean

Alias
UMLS CUI [1]
C2003850
car allowance
Description

car allowance

Data type

boolean

Alias
UMLS CUI [1,1]
C0556660
UMLS CUI [1,2]
C0004381
Individual plan according to LSS 10§
Description

Individual plan according to LSS 10§

Data type

boolean

Alias
UMLS CUI [1,1]
C0178916
UMLS CUI [1,2]
C1521721
HSL Habilitation Plan
Description

HSL Habilitation Plan

Data type

boolean

Alias
UMLS CUI [1,1]
C0018459
UMLS CUI [1,2]
C0178916
UMLS CUI [1,3]
C1521721
Coordinated Individual Plan (SIP)
Description

Coordinated Individual Plan (SIP)

Data type

boolean

Alias
UMLS CUI [1,1]
C0178916
UMLS CUI [1,2]
C1521721
Preschool / School
Description

Preschool / School

Alias
UMLS CUI-1
C0681405
UMLS CUI-2
C0036375
UMLS CUI-3
C1521721
Stay daytime: Home all day
Description

Home all day

Data type

boolean

Alias
UMLS CUI [1,1]
C0442519
UMLS CUI [1,2]
C0332169
Stay daytime: Preschool
Description

Preschool

Data type

boolean

Alias
UMLS CUI [1,1]
C0681405
UMLS CUI [1,2]
C0332169
Stay daytime: Family day
Description

Family day

Data type

boolean

Alias
UMLS CUI [1,1]
C0015576
UMLS CUI [1,2]
C0332169
Stay daytime: special Preschool
Description

special Preschool

Data type

boolean

Alias
UMLS CUI [1,1]
C0557805
UMLS CUI [1,2]
C0681405
UMLS CUI [1,3]
C0332169
school childcare/leisure
Description

school childcare/leisure

Data type

boolean

Alias
UMLS CUI [1,1]
C0036375
UMLS CUI [1,2]
C0683807
UMLS CUI [2]
C0086542
Additional resources in school / childcare
Description

Additional resources

Data type

boolean

Alias
UMLS CUI [1,1]
C0035201
UMLS CUI [1,2]
C0036375
UMLS CUI [2]
C0683807
If yes, what: Support of special educator / specialist teacher
Description

Support of specialist teacher

Data type

boolean

Alias
UMLS CUI [1,1]
C0221457
UMLS CUI [1,2]
C0871403
UMLS CUI [2]
C1521721
If yes, what: Assistant / resource appointed by preschool / school
Description

Assistant

Data type

boolean

Alias
UMLS CUI [1]
C0401893
UMLS CUI [2]
C1521721
If yes, what: Personal Assistance according to LSS / LASS
Description

Personal Assistance according to LSS

Data type

boolean

Alias
UMLS CUI [1,1]
C0401893
UMLS CUI [1,2]
C1521721
Medical background data
Description

Medical background data

Alias
UMLS CUI-1
C0262926
UMLS CUI-2
C0007789
Date of data collection:
Description

Date of data collection:

Data type

date

Alias
UMLS CUI [1,1]
C0010995
UMLS CUI [1,2]
C0011008
Interpreters were used in data collection
Description

Interpreters were used in data collection

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0010995
Spastic Bilateral Diplegia (= G80.1) ?
Description

Spastic Bilateral Diplegia

Data type

boolean

Alias
UMLS CUI [1,1]
C0270804
UMLS CUI [1,2]
C0238767
Spastic Unilateral Hemiplegia (=G80.2) ?
Description

Spastic Unilateral Hemiplegia

Data type

boolean

Alias
UMLS CUI [1,1]
C0270804
UMLS CUI [1,2]
C0205092
Dyskinetic (=G80.3) ?
Description

dyskinetic

Data type

boolean

Alias
UMLS CUI [1]
C0013384
Dyskinetic Tonic Change (=G80.3A) ?
Description

Dyskinetic Tonic Change

Data type

boolean

Alias
UMLS CUI [1,1]
C0013384
UMLS CUI [1,2]
C1836825
Dyskinetic Koreo-atetos (=G80.3B) ?
Description

Dyskinetic

Data type

boolean

Alias
UMLS CUI [1]
C0013384
Ataxia (=G80.4) ?
Description

ataxia

Data type

boolean

Alias
UMLS CUI [1]
C0004134
Spastic Bilateral Tetraplegia (=G80.8) ?
Description

Spastic Bilateral Tetraplegia

Data type

boolean

Alias
UMLS CUI [1,1]
C0837207
UMLS CUI [1,2]
C0238767
CP other (=G80.9)
Description

CP other

Data type

boolean

Alias
UMLS CUI [1]
C0007789
= GMFCS (I - V):
Description

GMFCS

Data type

integer

Alias
UMLS CUI [1,1]
C0677549
UMLS CUI [1,2]
C0456079
CT / MR brain
Description

CT / MR brain

Data type

boolean

Alias
UMLS CUI [1]
C0412585
UMLS CUI [2]
C0412675
Date of X-ray
Description

Date of X-ray

Data type

date

Alias
UMLS CUI [1,1]
C0011923
UMLS CUI [1,2]
C0011008
result diagnostic imaging
Description

result diagnostic imaging

Data type

text

Alias
UMLS CUI [1,1]
C1274040
UMLS CUI [1,2]
C0011923
Prenatal damage
Description

Prenatal damage

Data type

boolean

Alias
UMLS CUI [1,1]
C0270611
UMLS CUI [1,2]
C2735348
Perinatal damage
Description

Perinatal damage

Data type

boolean

Alias
UMLS CUI [1,1]
C0270611
UMLS CUI [1,2]
C0178795
Postnatal damage
Description

Postnatal damage

Data type

boolean

Alias
UMLS CUI [1,1]
C0270611
UMLS CUI [1,2]
C0443281
Unclear time
Description

Unclear time

Data type

boolean

Alias
UMLS CUI [1,1]
C0270611
UMLS CUI [1,2]
C2348792
UMLS CUI [1,3]
C3845108
Additional handicap
Description

Additional handicap

Alias
UMLS CUI-1
C0262926
UMLS CUI-2
C0520817
UMLS CUI-3
C0009488
Sight:
Description

Sight

Data type

integer

Alias
UMLS CUI [1]
C3665347
Hearing:
Description

Hearing

Data type

integer

Alias
UMLS CUI [1]
C1384666
Language / speech impairments
Description

Language / speech impairments

Data type

boolean

Alias
UMLS CUI [1,1]
C0233715
UMLS CUI [1,2]
C0564649
Dysphagia / difficulty swallowing
Description

Dysphagia / difficulty swallowing

Data type

boolean

Alias
UMLS CUI [1]
C0973461
UMLS CUI [2]
C0566355
Epilepsy (OBS diagnosis above)
Description

Epilepsy

Data type

boolean

Alias
UMLS CUI [1]
C0014544
Therapeutic resistance > 1g / month, despite 2 years of treatment
Description

resistant to therapy

Data type

boolean

Alias
UMLS CUI [1,1]
C0332325
UMLS CUI [1,2]
C0087111
Autism
Description

Autism

Data type

boolean

Alias
UMLS CUI [1]
C0004352
Autism Spectrum Disorders
Description

Autism Spectrum Disorders

Data type

boolean

Alias
UMLS CUI [1]
C1510586
Bladder function: Incontinence
Description

Incontinence

Data type

boolean

Alias
UMLS CUI [1]
C0021167
Bladder function: emptying disorder
Description

emptying disorder

Data type

boolean

Alias
UMLS CUI [1]
C0429805
Gastrointestinal function: intestinal incontinence
Description

intestinal incontinence

Data type

boolean

Alias
UMLS CUI [1,1]
C0021167
UMLS CUI [1,2]
C0516983
Gastrointestinal function: Constipation
Description

Constipation

Data type

boolean

Alias
UMLS CUI [1]
C0009806
dislocated hip (clicky hips)
Description

dislocated hip

Data type

boolean

Alias
UMLS CUI [1]
C0019554
dislocated hip bilateral
Description

dislocated hip bilateral

Data type

boolean

Alias
UMLS CUI [1,1]
C0019554
UMLS CUI [1,2]
C0238767
dislocated hip: scoliosis
Description

scoliosis

Data type

boolean

Alias
UMLS CUI [1]
C0036439
UMLS CUI [2]
C0019554
dislocated hip: Degree
Description

dislocated hip degree

Data type

integer

Alias
UMLS CUI [1,1]
C0019554
UMLS CUI [1,2]
C0439792
Gastrostomy / tube
Description

Gastrostomy / tube

Data type

boolean

Alias
UMLS CUI [1]
C0017196
UMLS CUI [2]
C0041281
Date of data collection:
Description

Date of data collection

Data type

date

Alias
UMLS CUI [1,1]
C0010995
UMLS CUI [1,2]
C0011008
height
Description

height

Data type

integer

Measurement units
  • cm
Alias
UMLS CUI [1]
C0005890
cm
Weight
Description

Weight

Data type

float

Measurement units
  • kg
Alias
UMLS CUI [1]
C0005910
kg
Attention to daily life
Description

Attention to daily life

Alias
UMLS CUI-1
C0001288
UMLS CUI-2
C0004268
UMLS CUI-3
C1521721
UMLS CUI-4
C0007789
Date of data collection
Description

Date of data collection

Data type

date

Alias
UMLS CUI [1,1]
C0010995
UMLS CUI [1,2]
C0011008
Interpreters were used in data collection
Description

Interpreters were used in data collection

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0010995
At home or in preschool: To maintain attention (d160 according to ICF)
Description

attention

Data type

integer

Alias
UMLS CUI [1]
C0004268
activities
Description

activities

Alias
UMLS CUI-1
C0001288
UMLS CUI-2
C1521721
UMLS CUI-3
C0007789
Date of data collection
Description

Date of data collection

Data type

date

Alias
UMLS CUI [1,1]
C0010995
UMLS CUI [1,2]
C0011008
Interpreters were used in data collection
Description

Interpreters were used in data collection

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0010995
Manual Ability Classification System (MACS)
Description

Manual Ability

Data type

integer

Alias
UMLS CUI [1,1]
C0175674
UMLS CUI [1,2]
C0085732
UMLS CUI [1,3]
C0008902
Gross Motor Function Classification System (GMFCS-ER)
Description

Gross Motor Function Classification System (GMFCS-ER)

Data type

integer

Alias
UMLS CUI [1,1]
C0677549
UMLS CUI [1,2]
C0456079
GMFM-66 not tested because of
Description

GMFM-66 not tested

Data type

integer

Alias
UMLS CUI [1]
C0677549
Gross Motor Function Measure (GMFM-66) score
Description

Gross Motor Function Measure (GMFM-66) score

Data type

float

Alias
UMLS CUI [1,1]
C0677549
UMLS CUI [1,2]
C0449820
GMFM-66 confidence interval (95 percent) lower than
Description

GMFM

Data type

float

Alias
UMLS CUI [1,1]
C0677549
UMLS CUI [1,2]
C0009667
GMFM-66 confidence interval (95 percent) higher than
Description

GMFM

Data type

float

Alias
UMLS CUI [1,1]
C0677549
UMLS CUI [1,2]
C0009667
Pediatric Evaluation of Disability Inventory (PEDI)
Description

Pediatric Evaluation of Disability Inventory (PEDI)

Alias
UMLS CUI-1
C0012605
UMLS CUI-2
C1521725
Date of data collection
Description

Date of data collection

Data type

date

Alias
UMLS CUI [1,1]
C0010995
UMLS CUI [1,2]
C0011008
Interpreters were used in data collection
Description

Interpreters were used in data collection

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0010995
PEDI not tested because of
Description

Pediatric Evaluation of Disability

Data type

integer

Alias
UMLS CUI [1,1]
C0012605
UMLS CUI [1,2]
C1521725
Functional skills
Description

Functional skills

Alias
UMLS CUI-1
C0678856
UMLS CUI-2
C1518965
UMLS CUI-3
C0007789
Personal care raw score
Description

Personal care score

Data type

integer

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Functional skills Personal care Normative points
Description

Personal care Normative points

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Functional skills Personal care Normative points Below 10 <
Description

Personal care Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Functional skills Personal care Normative points Above 90 >
Description

Personal care Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Functional skills Personal care mean error (1 SE)
Description

Personal care mean error

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Functional skills Personal care scale score
Description

Personal care scale score

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Functional skills Personal care Average mean error (1 SE)
Description

Personal care Average mean error

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
mobility score
Description

mobility score

Data type

integer

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
mobility Normative points
Description

mobility Normative points

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
mobility Normative points Below 10 <
Description

mobility Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
mobility Normative points Above 90 >
Description

mobility Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
mobility mean error (1 SE)
Description

mobility mean error (1 SE)

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
mobility scale score
Description

mobility scale score

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
mobility Average mean error (1 SE)
Description

mobility Average mean error

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Social ability raw score
Description

Social ability score

Data type

integer

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Social ability Normative points
Description

Social ability Normative points

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Social ability Normative points Below 10 <
Description

Social ability Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Social ability Normative points Above 90 >
Description

Social ability Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Social ability mean error (1 SE)
Description

Social ability mean error (1 SE)

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Social ability scale score
Description

Social ability scale score

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Social ability Average mean error
Description

Social ability Average mean error

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Help Requirements
Description

Help Requirements

Alias
UMLS CUI-1
C1521721
UMLS CUI-2
C1514873
UMLS CUI-3
C0007789
help Requirements
Description

help Requirements

Data type

integer

Alias
UMLS CUI [1,1]
C1521721
UMLS CUI [1,2]
C1514873
UMLS CUI [1,3]
C0007789
Personal care raw score
Description

Personal care score

Data type

integer

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Functional skills Personal care Normative points
Description

Personal care Normative points

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Functional skills Personal care Normative points Below 10 <
Description

Personal care Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Functional skills Personal care Normative points Above 90 >
Description

Personal care Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Functional skills Personal care mean error (1 SE)
Description

Personal care mean error

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Functional skills Personal care scale score
Description

Personal care scale score

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Functional skills Personal care Average mean error (1 SE)
Description

Personal care Average mean error

Data type

float

Alias
UMLS CUI [1,1]
C0563471
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
mobility score
Description

mobility score

Data type

integer

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
mobility Normative points
Description

mobility Normative points

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
mobility Normative points Below 10 <
Description

mobility Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
mobility Normative points Above 90 >
Description

mobility Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
mobility mean error (1 SE)
Description

mobility mean error (1 SE)

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
mobility scale score
Description

mobility scale score

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
mobility Average mean error (1 SE)
Description

mobility Average mean error

Data type

float

Alias
UMLS CUI [1,1]
C0449580
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Social ability raw score
Description

Social ability score

Data type

integer

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Social ability Normative points
Description

Social ability Normative points

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Social ability Normative points Below 10 <
Description

Social ability Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Social ability Normative points Above 90 >
Description

Social ability Normative points

Data type

boolean

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1510992
Social ability mean error (1 SE)
Description

Social ability mean error (1 SE)

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Social ability scale score
Description

Social ability scale score

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C0449820
Social ability Average mean error
Description

Social ability Average mean error

Data type

float

Alias
UMLS CUI [1,1]
C0679005
UMLS CUI [1,2]
C1518965
UMLS CUI [1,3]
C1710181
Number of adjustments: Personal care
Description

adjustments Personal care

Data type

integer

Alias
UMLS CUI [1,1]
C0376209
UMLS CUI [1,2]
C0563471
Number of adjustments: mobility
Description

adjustments mobility

Data type

integer

Alias
UMLS CUI [1,1]
C0376209
UMLS CUI [1,2]
C0449580
Number of adjustments: Social ability
Description

adjustments Social ability

Data type

integer

Alias
UMLS CUI [1,1]
C0376209
UMLS CUI [1,2]
C0679005
Communication - Language - Eating
Description

Communication - Language - Eating

Alias
UMLS CUI-1
C0870313
UMLS CUI-2
C1145677
UMLS CUI-3
C0566304
UMLS CUI-4
C1518965
UMLS CUI-5
C0007789
Date of data collection
Description

Date of data collection

Data type

date

Alias
UMLS CUI [1,1]
C0010995
UMLS CUI [1,2]
C0011008
Interpreters were used in data collection
Description

Interpreters were used in data collection

Data type

boolean

Alias
UMLS CUI [1,1]
C0150646
UMLS CUI [1,2]
C0010995
Communication - Language - Eating
Description

Communication - Language - Eating

Data type

integer

Alias
UMLS CUI [1]
C0870313
UMLS CUI [2]
C1145677
UMLS CUI [3]
C0566304
Impairment Speech and language
Description

Impairment Speech and language

Data type

float

Alias
UMLS CUI [1]
C0233715
UMLS CUI [2]
C1145677
Impairment phonology
Description

Impairment phonology

Data type

float

Alias
UMLS CUI [1]
C1865893
Impairment dysarthria
Description

Impairment dysarthria

Data type

float

Alias
UMLS CUI [1]
C0013362
Impairment dysphagia
Description

Impairment dysphagia

Data type

text

Alias
UMLS CUI [1]
C0011168
Activity Speech and language
Description

Activity Speech and language

Data type

float

Alias
UMLS CUI [1,1]
C0564649
UMLS CUI [1,2]
C0441655
Activity phonology
Description

Activity phonology

Data type

float

Alias
UMLS CUI [1,1]
C0597725
UMLS CUI [1,2]
C0441655
Activity dysarthria
Description

Activity dysarthria

Data type

float

Alias
UMLS CUI [1,1]
C0013362
UMLS CUI [1,2]
C0441655
Activity dysphagia
Description

Activity dysphagia

Data type

float

Alias
UMLS CUI [1,1]
C0011168
UMLS CUI [1,2]
C0441655
Activity Appendix Communicative efficiency
Description

Activity Appendix Communicative efficiency

Data type

text

Alias
UMLS CUI [1,1]
C0870313
UMLS CUI [1,2]
C0441655
Participation Speech and language
Description

Participation Speech and language

Data type

float

Alias
UMLS CUI [1,1]
C0564649
UMLS CUI [1,2]
C0679823
Participation dysphagia
Description

Participation dysphagia

Data type

float

Alias
UMLS CUI [1,1]
C0011168
UMLS CUI [1,2]
C0679823
Participation Appendix Communicative efficiency
Description

Participation Appendix Communicative efficiency

Data type

float

Alias
UMLS CUI [1,1]
C0870313
UMLS CUI [1,2]
C0679823
Background issues regarding socio-emotional and practical support to Parents / Guardians
Description

Background issues regarding socio-emotional and practical support to Parents / Guardians

Alias
UMLS CUI-1
C1521721
UMLS CUI-2
C0600015
UMLS CUI-3
C0030551
Date of assessment:
Description

Date of assessment

Data type

date

Alias
UMLS CUI [1,1]
C0034394
UMLS CUI [1,2]
C0011008
Form Answered by:
Description

Form Answered by

Data type

integer

Alias
UMLS CUI [1,1]
C0034394
UMLS CUI [1,2]
C0508431
1.A How much help do you get from parents / guardians from close associates around your / yours children?
Description

help from relatives

Data type

integer

Alias
UMLS CUI [1,1]
C1521721
UMLS CUI [1,2]
C0581904
1.B How satisfied are you / you as parents / guardians with this amount of help from related?
Description

satisfied with this amount of help from relatives

Data type

integer

Alias
UMLS CUI [1,1]
C0581904
UMLS CUI [1,2]
C0242428
2.A How much help do you / you receive as parents / guardians from non-family members eg friends?
Description

help from non-family members eg friends

Data type

integer

Alias
UMLS CUI [1]
C0557462
2.B How satisfied are you / you as parents / guardians with this amount of help from non-family members around your / your child?
Description

satisfied with this amount of help from non-family members

Data type

integer

Alias
UMLS CUI [1,1]
C0557462
UMLS CUI [1,2]
C0242428
3. How easy or difficult do you / you think as a parent / guardian is to arrange a babysitter when you / you want / need it?
Description

babysitter

Data type

integer

Alias
UMLS CUI [1]
C0337606
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Similar models

3 year follow up Health monitoring of children and adolescents with Cerebral Palsy

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
3 year follow up Health monitoring of children and adolescents with Cerebral Palsy
C0007789 (UMLS CUI-1)
C1522577 (UMLS CUI-2)
C0017313 (UMLS CUI-3)
C0030695 (UMLS CUI-4)
Study ID
Item
Study ID
text
C2348585 (UMLS CUI [1])
name
Item
name
text
C0027365 (UMLS CUI [1])
ID-nr Compos
Item
ID-nr Compos
text
rehabilitation unit
Item
rehabilitation unit
text
C0018704 (UMLS CUI [1,1])
C0034991 (UMLS CUI [1,2])
C1549700 (UMLS CUI [1,3])
Item Group
Demography
C0011298 (UMLS CUI-1)
C1955348 (UMLS CUI-2)
Date of data collection
Item
Date of data collection
date
C0010995 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Interpreters were used in data collection
Item
Interpreters were used in data collection
boolean
C0150646 (UMLS CUI [1,1])
C0010995 (UMLS CUI [1,2])
Family, Mother is biological parent
Item
Family, Mother is biological parent
boolean
C0026591 (UMLS CUI [1,1])
C0337465 (UMLS CUI [1,2])
Year of birth mother
Item
Year of birth mother
integer
C2319404 (UMLS CUI [1])
Family, Father is biological parent
Item
Family, Father is biological parent
boolean
C0015671 (UMLS CUI [1,1])
C0337465 (UMLS CUI [1,2])
Year of birth father
Item
Year of birth father
integer
C2136977 (UMLS CUI [1])
Mother is born in another country
Item
Mother is born in another country
boolean
C1300001 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
Mother immigrated from
Item
Mother immigrated from
text
C0026591 (UMLS CUI [1,1])
C0020942 (UMLS CUI [1,2])
C0454664 (UMLS CUI [1,3])
Mother came to Sweden year
Item
Mother came to Sweden year
integer
C0020942 (UMLS CUI [1,1])
C0038995 (UMLS CUI [1,2])
C0026591 (UMLS CUI [1,3])
Mother needs an interpreter
Item
Mother needs an interpreter
boolean
C0150646 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
The father was born in another country
Item
The father was born in another country
boolean
C1300001 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
The father immigrated from
Item
The father immigrated from
text
C0015671 (UMLS CUI [1,1])
C0020942 (UMLS CUI [1,2])
C0454664 (UMLS CUI [1,3])
The father came to Sweden year
Item
The father came to Sweden year
integer
C0020942 (UMLS CUI [1,1])
C0038995 (UMLS CUI [1,2])
C0015671 (UMLS CUI [1,3])
The father needs an interpreter
Item
The father needs an interpreter
boolean
C0150646 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
Item
The child lives with
integer
C2184149 (UMLS CUI [1])
The child lives with
Code List
The child lives with
CL Item
Both parents (1)
CL Item
The mother (2)
CL Item
The father (3)
CL Item
Exchange Housing (4)
Other accommodation
Item
Other accommodation
text
C2184149 (UMLS CUI [1])
Sibling
Item
Sibling
boolean
C0037047 (UMLS CUI [1])
Sibling's birth year
Item
Sibling's birth year
integer
C0037047 (UMLS CUI [1,1])
C2826771 (UMLS CUI [1,2])
Item Group
Community Outreach
C0009482 (UMLS CUI-1)
C0037438 (UMLS CUI-2)
C1521721 (UMLS CUI-3)
Social support, Care contribution
Item
Social support, Care contribution
boolean
C0037438 (UMLS CUI [1])
Item
How much care allowance
integer
C0017313 (UMLS CUI [1,1])
C0556660 (UMLS CUI [1,2])
How much care allowance
Code List
How much care allowance
CL Item
25% (1)
CL Item
50% (2)
CL Item
75% (3)
CL Item
100% (4)
Actions according to SoL
Item
Actions according to SoL
boolean
What actions according to SoL
Item
What actions according to SoL
text
Actions according to LSS 9§
Item
Actions according to LSS 9§
boolean
Advice and other personal support
Item
If yes, check which ones Advice and other personal support
boolean
C1521721 (UMLS CUI [1])
Personal Assistant
Item
Personal Assistant
boolean
C0401893 (UMLS CUI [1])
Item
Personal Assistant Number of hours / week
integer
C0401893 (UMLS CUI [1])
Personal Assistant Number of hours / week
Code List
Personal Assistant Number of hours / week
CL Item
less than 10 (1)
CL Item
> 10-20 (2)
CL Item
> 20-40 (3)
CL Item
more than 40 (4)
Attendant Service
Item
Attendant Service
boolean
C0554205 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
Contact
Item
Contact
boolean
C0337611 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
Relief service at home
Item
Relief service at home
boolean
C1521721 (UMLS CUI [1,1])
C0442519 (UMLS CUI [1,2])
Short-term stay outside of home
Item
Short-term stay outside of home
boolean
C0034993 (UMLS CUI [1,1])
C0023303 (UMLS CUI [1,2])
Short-term supervision for schoolchildren over 12 years
Item
Short-term supervision for schoolchildren over 12 years
boolean
C0038842 (UMLS CUI [1,1])
C0008059 (UMLS CUI [1,2])
Accommodation
Item
Accommodation in a family home or in a residence with special service for children and adolescents
boolean
C0595920 (UMLS CUI [1])
Personal assistance according to LASS
Item
Personal assistance according to LASS
boolean
C1521721 (UMLS CUI [1])
Item
Number of hours / week personal assistant according to LASS
integer
C1521721 (UMLS CUI [1])
Number of hours / week personal assistant according to LASS
Code List
Number of hours / week personal assistant according to LASS
CL Item
20-40  (1)
CL Item
41-60 (2)
CL Item
more than 60 (3)
Coordinated plan according to SOFS§2008: 20
Item
Coordinated plan according to SOFS§2008: 20
boolean
C0178916 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
Transportation service
Item
Transportation service
boolean
C2003850 (UMLS CUI [1])
car allowance
Item
car allowance
boolean
C0556660 (UMLS CUI [1,1])
C0004381 (UMLS CUI [1,2])
Individual plan according to LSS 10§
Item
Individual plan according to LSS 10§
boolean
C0178916 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
HSL Habilitation Plan
Item
HSL Habilitation Plan
boolean
C0018459 (UMLS CUI [1,1])
C0178916 (UMLS CUI [1,2])
C1521721 (UMLS CUI [1,3])
Coordinated Individual Plan (SIP)
Item
Coordinated Individual Plan (SIP)
boolean
C0178916 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
Item Group
Preschool / School
C0681405 (UMLS CUI-1)
C0036375 (UMLS CUI-2)
C1521721 (UMLS CUI-3)
Home all day
Item
Stay daytime: Home all day
boolean
C0442519 (UMLS CUI [1,1])
C0332169 (UMLS CUI [1,2])
Preschool
Item
Stay daytime: Preschool
boolean
C0681405 (UMLS CUI [1,1])
C0332169 (UMLS CUI [1,2])
Family day
Item
Stay daytime: Family day
boolean
C0015576 (UMLS CUI [1,1])
C0332169 (UMLS CUI [1,2])
special Preschool
Item
Stay daytime: special Preschool
boolean
C0557805 (UMLS CUI [1,1])
C0681405 (UMLS CUI [1,2])
C0332169 (UMLS CUI [1,3])
school childcare/leisure
Item
school childcare/leisure
boolean
C0036375 (UMLS CUI [1,1])
C0683807 (UMLS CUI [1,2])
C0086542 (UMLS CUI [2])
Additional resources
Item
Additional resources in school / childcare
boolean
C0035201 (UMLS CUI [1,1])
C0036375 (UMLS CUI [1,2])
C0683807 (UMLS CUI [2])
Support of specialist teacher
Item
If yes, what: Support of special educator / specialist teacher
boolean
C0221457 (UMLS CUI [1,1])
C0871403 (UMLS CUI [1,2])
C1521721 (UMLS CUI [2])
Assistant
Item
If yes, what: Assistant / resource appointed by preschool / school
boolean
C0401893 (UMLS CUI [1])
C1521721 (UMLS CUI [2])
Personal Assistance according to LSS
Item
If yes, what: Personal Assistance according to LSS / LASS
boolean
C0401893 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
Item Group
Medical background data
C0262926 (UMLS CUI-1)
C0007789 (UMLS CUI-2)
Date of data collection:
Item
Date of data collection:
date
C0010995 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Interpreters were used in data collection
Item
Interpreters were used in data collection
boolean
C0150646 (UMLS CUI [1,1])
C0010995 (UMLS CUI [1,2])
Spastic Bilateral Diplegia
Item
Spastic Bilateral Diplegia (= G80.1) ?
boolean
C0270804 (UMLS CUI [1,1])
C0238767 (UMLS CUI [1,2])
Spastic Unilateral Hemiplegia
Item
Spastic Unilateral Hemiplegia (=G80.2) ?
boolean
C0270804 (UMLS CUI [1,1])
C0205092 (UMLS CUI [1,2])
dyskinetic
Item
Dyskinetic (=G80.3) ?
boolean
C0013384 (UMLS CUI [1])
Dyskinetic Tonic Change
Item
Dyskinetic Tonic Change (=G80.3A) ?
boolean
C0013384 (UMLS CUI [1,1])
C1836825 (UMLS CUI [1,2])
Dyskinetic
Item
Dyskinetic Koreo-atetos (=G80.3B) ?
boolean
C0013384 (UMLS CUI [1])
ataxia
Item
Ataxia (=G80.4) ?
boolean
C0004134 (UMLS CUI [1])
Spastic Bilateral Tetraplegia
Item
Spastic Bilateral Tetraplegia (=G80.8) ?
boolean
C0837207 (UMLS CUI [1,1])
C0238767 (UMLS CUI [1,2])
CP other
Item
CP other (=G80.9)
boolean
C0007789 (UMLS CUI [1])
GMFCS
Item
= GMFCS (I - V):
integer
C0677549 (UMLS CUI [1,1])
C0456079 (UMLS CUI [1,2])
CT / MR brain
Item
CT / MR brain
boolean
C0412585 (UMLS CUI [1])
C0412675 (UMLS CUI [2])
Date of X-ray
Item
Date of X-ray
date
C0011923 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
result diagnostic imaging
Item
result diagnostic imaging
text
C1274040 (UMLS CUI [1,1])
C0011923 (UMLS CUI [1,2])
Prenatal damage
Item
Prenatal damage
boolean
C0270611 (UMLS CUI [1,1])
C2735348 (UMLS CUI [1,2])
Perinatal damage
Item
Perinatal damage
boolean
C0270611 (UMLS CUI [1,1])
C0178795 (UMLS CUI [1,2])
Postnatal damage
Item
Postnatal damage
boolean
C0270611 (UMLS CUI [1,1])
C0443281 (UMLS CUI [1,2])
Unclear time
Item
Unclear time
boolean
C0270611 (UMLS CUI [1,1])
C2348792 (UMLS CUI [1,2])
C3845108 (UMLS CUI [1,3])
Item Group
Additional handicap
C0262926 (UMLS CUI-1)
C0520817 (UMLS CUI-2)
C0009488 (UMLS CUI-3)
Item
Sight:
integer
C3665347 (UMLS CUI [1])
Sight:
Code List
Sight:
CL Item
Unknown (1)
CL Item
Cortical Visual Impairment (2)
CL Item
Hemianopsia (3)
CL Item
Visible 0.1-0.3 (4)
CL Item
Blind less than 0.1 (5)
Item
Hearing:
integer
C1384666 (UMLS CUI [1])
Hearing:
Code List
Hearing:
CL Item
Unknown (1)
CL Item
Impaired hearing  (2)
CL Item
Hearing aid (3)
CL Item
Deaf (4)
Language / speech impairments
Item
Language / speech impairments
boolean
C0233715 (UMLS CUI [1,1])
C0564649 (UMLS CUI [1,2])
Dysphagia / difficulty swallowing
Item
Dysphagia / difficulty swallowing
boolean
C0973461 (UMLS CUI [1])
C0566355 (UMLS CUI [2])
Epilepsy
Item
Epilepsy (OBS diagnosis above)
boolean
C0014544 (UMLS CUI [1])
resistant to therapy
Item
Therapeutic resistance > 1g / month, despite 2 years of treatment
boolean
C0332325 (UMLS CUI [1,1])
C0087111 (UMLS CUI [1,2])
Autism
Item
Autism
boolean
C0004352 (UMLS CUI [1])
Autism Spectrum Disorders
Item
Autism Spectrum Disorders
boolean
C1510586 (UMLS CUI [1])
Incontinence
Item
Bladder function: Incontinence
boolean
C0021167 (UMLS CUI [1])
emptying disorder
Item
Bladder function: emptying disorder
boolean
C0429805 (UMLS CUI [1])
intestinal incontinence
Item
Gastrointestinal function: intestinal incontinence
boolean
C0021167 (UMLS CUI [1,1])
C0516983 (UMLS CUI [1,2])
Constipation
Item
Gastrointestinal function: Constipation
boolean
C0009806 (UMLS CUI [1])
dislocated hip
Item
dislocated hip (clicky hips)
boolean
C0019554 (UMLS CUI [1])
dislocated hip bilateral
Item
dislocated hip bilateral
boolean
C0019554 (UMLS CUI [1,1])
C0238767 (UMLS CUI [1,2])
scoliosis
Item
dislocated hip: scoliosis
boolean
C0036439 (UMLS CUI [1])
C0019554 (UMLS CUI [2])
dislocated hip degree
Item
dislocated hip: Degree
integer
C0019554 (UMLS CUI [1,1])
C0439792 (UMLS CUI [1,2])
Gastrostomy / tube
Item
Gastrostomy / tube
boolean
C0017196 (UMLS CUI [1])
C0041281 (UMLS CUI [2])
Date of data collection
Item
Date of data collection:
date
C0010995 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
height
Item
height
integer
C0005890 (UMLS CUI [1])
Weight
Item
Weight
float
C0005910 (UMLS CUI [1])
Item Group
Attention to daily life
C0001288 (UMLS CUI-1)
C0004268 (UMLS CUI-2)
C1521721 (UMLS CUI-3)
C0007789 (UMLS CUI-4)
Date of data collection
Item
Date of data collection
date
C0010995 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Interpreters were used in data collection
Item
Interpreters were used in data collection
boolean
C0150646 (UMLS CUI [1,1])
C0010995 (UMLS CUI [1,2])
Item
At home or in preschool: To maintain attention (d160 according to ICF)
integer
C0004268 (UMLS CUI [1])
At home or in preschool
Code List
At home or in preschool: To maintain attention (d160 according to ICF)
CL Item
No difficulty (1)
CL Item
Easy difficulty (2)
CL Item
Moderate difficulty (3)
CL Item
Great difficulty (4)
CL Item
Total difficulty (5)
CL Item
Not specified (6)
CL Item
Not applicable (7)
Item Group
activities
C0001288 (UMLS CUI-1)
C1521721 (UMLS CUI-2)
C0007789 (UMLS CUI-3)
Date of data collection
Item
Date of data collection
date
C0010995 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Interpreters were used in data collection
Item
Interpreters were used in data collection
boolean
C0150646 (UMLS CUI [1,1])
C0010995 (UMLS CUI [1,2])
Manual Ability
Item
Manual Ability Classification System (MACS)
integer
C0175674 (UMLS CUI [1,1])
C0085732 (UMLS CUI [1,2])
C0008902 (UMLS CUI [1,3])
Gross Motor Function Classification System (GMFCS-ER)
Item
Gross Motor Function Classification System (GMFCS-ER)
integer
C0677549 (UMLS CUI [1,1])
C0456079 (UMLS CUI [1,2])
Item
GMFM-66 not tested because of
integer
C0677549 (UMLS CUI [1])
GMFM-66 not tested because of:
Code List
GMFM-66 not tested because of
CL Item
Less than the measuring range (1)
CL Item
Greater than the measuring range (2)
Gross Motor Function Measure (GMFM-66) score
Item
Gross Motor Function Measure (GMFM-66) score
float
C0677549 (UMLS CUI [1,1])
C0449820 (UMLS CUI [1,2])
GMFM
Item
GMFM-66 confidence interval (95 percent) lower than
float
C0677549 (UMLS CUI [1,1])
C0009667 (UMLS CUI [1,2])
GMFM
Item
GMFM-66 confidence interval (95 percent) higher than
float
C0677549 (UMLS CUI [1,1])
C0009667 (UMLS CUI [1,2])
Item Group
Pediatric Evaluation of Disability Inventory (PEDI)
C0012605 (UMLS CUI-1)
C1521725 (UMLS CUI-2)
Date of data collection
Item
Date of data collection
date
C0010995 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Interpreters were used in data collection
Item
Interpreters were used in data collection
boolean
C0150646 (UMLS CUI [1,1])
C0010995 (UMLS CUI [1,2])
Item
PEDI not tested because of
integer
C0012605 (UMLS CUI [1,1])
C1521725 (UMLS CUI [1,2])
PEDI not tested because of:
Code List
PEDI not tested because of
CL Item
Less than the measuring range (1)
CL Item
Greater than the range (2)
Item Group
Functional skills
C0678856 (UMLS CUI-1)
C1518965 (UMLS CUI-2)
C0007789 (UMLS CUI-3)
Personal care score
Item
Personal care raw score
integer
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Personal care Normative points
Item
Functional skills Personal care Normative points
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Personal care Normative points
Item
Functional skills Personal care Normative points Below 10 <
boolean
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Personal care Normative points
Item
Functional skills Personal care Normative points Above 90 >
boolean
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Personal care mean error
Item
Functional skills Personal care mean error (1 SE)
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Personal care scale score
Item
Functional skills Personal care scale score
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Personal care Average mean error
Item
Functional skills Personal care Average mean error (1 SE)
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
mobility score
Item
mobility score
integer
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
mobility Normative points
Item
mobility Normative points
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
mobility Normative points
Item
mobility Normative points Below 10 <
boolean
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
mobility Normative points
Item
mobility Normative points Above 90 >
boolean
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
mobility mean error (1 SE)
Item
mobility mean error (1 SE)
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
mobility scale score
Item
mobility scale score
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
mobility Average mean error
Item
mobility Average mean error (1 SE)
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Social ability score
Item
Social ability raw score
integer
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Social ability Normative points
Item
Social ability Normative points
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Social ability Normative points
Item
Social ability Normative points Below 10 <
boolean
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Social ability Normative points
Item
Social ability Normative points Above 90 >
boolean
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Social ability mean error (1 SE)
Item
Social ability mean error (1 SE)
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Social ability scale score
Item
Social ability scale score
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Social ability Average mean error
Item
Social ability Average mean error
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Item Group
Help Requirements
C1521721 (UMLS CUI-1)
C1514873 (UMLS CUI-2)
C0007789 (UMLS CUI-3)
Item
help Requirements
integer
C1521721 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0007789 (UMLS CUI [1,3])
help Requirements
Code List
help Requirements
CL Item
total (1)
CL Item
none (2)
Personal care score
Item
Personal care raw score
integer
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Personal care Normative points
Item
Functional skills Personal care Normative points
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Personal care Normative points
Item
Functional skills Personal care Normative points Below 10 <
boolean
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Personal care Normative points
Item
Functional skills Personal care Normative points Above 90 >
boolean
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Personal care mean error
Item
Functional skills Personal care mean error (1 SE)
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Personal care scale score
Item
Functional skills Personal care scale score
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Personal care Average mean error
Item
Functional skills Personal care Average mean error (1 SE)
float
C0563471 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
mobility score
Item
mobility score
integer
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
mobility Normative points
Item
mobility Normative points
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
mobility Normative points
Item
mobility Normative points Below 10 <
boolean
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
mobility Normative points
Item
mobility Normative points Above 90 >
boolean
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
mobility mean error (1 SE)
Item
mobility mean error (1 SE)
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
mobility scale score
Item
mobility scale score
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
mobility Average mean error
Item
mobility Average mean error (1 SE)
float
C0449580 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Social ability score
Item
Social ability raw score
integer
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Social ability Normative points
Item
Social ability Normative points
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Social ability Normative points
Item
Social ability Normative points Below 10 <
boolean
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Social ability Normative points
Item
Social ability Normative points Above 90 >
boolean
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1510992 (UMLS CUI [1,3])
Social ability mean error (1 SE)
Item
Social ability mean error (1 SE)
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Social ability scale score
Item
Social ability scale score
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C0449820 (UMLS CUI [1,3])
Social ability Average mean error
Item
Social ability Average mean error
float
C0679005 (UMLS CUI [1,1])
C1518965 (UMLS CUI [1,2])
C1710181 (UMLS CUI [1,3])
Item
Number of adjustments: Personal care
integer
C0376209 (UMLS CUI [1,1])
C0563471 (UMLS CUI [1,2])
Number of adjustments: Personal care
Code List
Number of adjustments: Personal care
CL Item
None (1)
CL Item
General (2)
CL Item
Aids (3)
CL Item
Extensive (4)
Item
Number of adjustments: mobility
integer
C0376209 (UMLS CUI [1,1])
C0449580 (UMLS CUI [1,2])
Number of adjustments: Personal care
Code List
Number of adjustments: mobility
CL Item
None (1)
CL Item
General (2)
CL Item
Aids (3)
CL Item
Extensive (4)
Item
Number of adjustments: Social ability
integer
C0376209 (UMLS CUI [1,1])
C0679005 (UMLS CUI [1,2])
Number of adjustments: Personal care
Code List
Number of adjustments: Social ability
CL Item
None (1)
CL Item
General (2)
CL Item
Aids (3)
CL Item
Extensive (4)
Item Group
Communication - Language - Eating
C0870313 (UMLS CUI-1)
C1145677 (UMLS CUI-2)
C0566304 (UMLS CUI-3)
C1518965 (UMLS CUI-4)
C0007789 (UMLS CUI-5)
Date of data collection
Item
Date of data collection
date
C0010995 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Interpreters were used in data collection
Item
Interpreters were used in data collection
boolean
C0150646 (UMLS CUI [1,1])
C0010995 (UMLS CUI [1,2])
Item
Communication - Language - Eating
integer
C0870313 (UMLS CUI [1])
C1145677 (UMLS CUI [2])
C0566304 (UMLS CUI [3])
undefined item
Code List
Communication - Language - Eating
CL Item
Observation (1)
CL Item
Interview (2)
CL Item
Formal testing (3)
Impairment Speech and language
Item
Impairment Speech and language
float
C0233715 (UMLS CUI [1])
C1145677 (UMLS CUI [2])
Impairment phonology
Item
Impairment phonology
float
C1865893 (UMLS CUI [1])
Impairment dysarthria
Item
Impairment dysarthria
float
C0013362 (UMLS CUI [1])
Impairment dysphagia
Item
Impairment dysphagia
text
C0011168 (UMLS CUI [1])
Activity Speech and language
Item
Activity Speech and language
float
C0564649 (UMLS CUI [1,1])
C0441655 (UMLS CUI [1,2])
Activity phonology
Item
Activity phonology
float
C0597725 (UMLS CUI [1,1])
C0441655 (UMLS CUI [1,2])
Activity dysarthria
Item
Activity dysarthria
float
C0013362 (UMLS CUI [1,1])
C0441655 (UMLS CUI [1,2])
Activity dysphagia
Item
Activity dysphagia
float
C0011168 (UMLS CUI [1,1])
C0441655 (UMLS CUI [1,2])
Activity Appendix Communicative efficiency
Item
Activity Appendix Communicative efficiency
text
C0870313 (UMLS CUI [1,1])
C0441655 (UMLS CUI [1,2])
Participation Speech and language
Item
Participation Speech and language
float
C0564649 (UMLS CUI [1,1])
C0679823 (UMLS CUI [1,2])
Participation dysphagia
Item
Participation dysphagia
float
C0011168 (UMLS CUI [1,1])
C0679823 (UMLS CUI [1,2])
Participation Appendix Communicative efficiency
Item
Participation Appendix Communicative efficiency
float
C0870313 (UMLS CUI [1,1])
C0679823 (UMLS CUI [1,2])
Item Group
Background issues regarding socio-emotional and practical support to Parents / Guardians
C1521721 (UMLS CUI-1)
C0600015 (UMLS CUI-2)
C0030551 (UMLS CUI-3)
Date of assessment
Item
Date of assessment:
date
C0034394 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
Form Answered by:
integer
C0034394 (UMLS CUI [1,1])
C0508431 (UMLS CUI [1,2])
Form Answered by:
Code List
Form Answered by:
CL Item
Mom (1)
CL Item
Dad (2)
CL Item
Both parents (3)
CL Item
Other (4)
help from relatives
Item
1.A How much help do you get from parents / guardians from close associates around your / yours children?
integer
C1521721 (UMLS CUI [1,1])
C0581904 (UMLS CUI [1,2])
satisfied with this amount of help from relatives
Item
1.B How satisfied are you / you as parents / guardians with this amount of help from related?
integer
C0581904 (UMLS CUI [1,1])
C0242428 (UMLS CUI [1,2])
help from non-family members eg friends
Item
2.A How much help do you / you receive as parents / guardians from non-family members eg friends?
integer
C0557462 (UMLS CUI [1])
satisfied with this amount of help from non-family members
Item
2.B How satisfied are you / you as parents / guardians with this amount of help from non-family members around your / your child?
integer
C0557462 (UMLS CUI [1,1])
C0242428 (UMLS CUI [1,2])
Item
3. How easy or difficult do you / you think as a parent / guardian is to arrange a babysitter when you / you want / need it?
integer
C0337606 (UMLS CUI [1])
3. How easy or difficult do you / you think as a parent / guardian is to arrange a babysitter when you / you want / need it?
Code List
3. How easy or difficult do you / you think as a parent / guardian is to arrange a babysitter when you / you want / need it?
CL Item
Very difficult (1)
CL Item
Difficult (2)
CL Item
Sometimes easy / sometimes difficult (3)
CL Item
Easy (4)
CL Item
Very easy (5)
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