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PROMIS Pediatric – Upper Extremity

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Purpose

Domain focused, self-reported and parent-reported measures of global, physical, mental, and social health for adults and children in the general population and those living with a chronic condition.

Link to Instrument

Instrument Details

Area of Assessment

Upper Extremity Function

Assessment Type

Patient Reported Outcomes

Cost

Free

Actual Cost

$0.00

Cost Description

Free unless using NIH Toolbox, then $499.99 per year for subscription

CDE Status

Availability

The instrument is freely available here: PROMIS website.

See General Page for currently available PROMIS Bank CDE Details.

Classification

Supplemental - Highly Recommended: Stroke, Congenital Muscular Dystrophy (CMD) in studies of psychosocial functioning, quality-of-life, outcome, and long-term adjustment studies.

 Supplemental: Traumatic Brain Injury (TBI), Amyotrophic Lateral Sclerosis (ALS), Chiari I Malformation (CM), Epilepsy, Friedreich's Ataxia (FA), Headache, Huntington's Disease (HD), Mitochondrial Disease (Mito), Multiple Sclerosis (MS), Myasthenia Gravis (MG), Neuromuscular Diseases (NMD), Duchenne/Becker Muscular Dystrophy (DMD/BMD), Spinal Muscular Atrophy (SMA), Parkinson's Disease (PD), Stroke, and Spinal Cord Injury (SCI), and Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage (SAH)

Exploratory: Cerebral Palsy (CP) Myotonic Muscular Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD) and Sport-Related Concussion (SRC)

*Headache specific subtest recommendations : Anxiety (Adult/Pediatric), Depression (Adult/Pediatric), Sleep (Adult)

Key Descriptions

  • Usually 4-12 items for each section domain depending on which type of test is being performed (Short Form, CAT, or Profile)
  • Minimum and maximum scores depends on the form being used
  • Scoring: Item-levels are scored numerically for an individual's response to each question. PROMIS recommends the best way to find the total raw score is using the free HealthMeasures Scoring Service (https://www.assessmentcenter.net/ac_scoringservice) or a tool that can automatically calculate scores. Scores can also be added up by hand to find the total raw score. Then the raw score is converted to a T-score using the table in the Appendix of the link below. This standardizes the score with a mean of 50 and standard deviation of 10. Being above or below the standard deviation could be desirable or undesirable based on the domain being measured.
  • Higher scores means more of the concept being measured. Example = more functioning

Number of Items

Item Bank
Pediatric
• Item bank: 34
• Short form: 8
Parent proxy report for pediatric patients
• Item bank: 29
• Short form: 8
Computer adaptive tests (CAT)
Items dynamically selected for administration from the item bank based on respondent’s previous answer. Usually between 4-12 items or questions.

Time to Administer

5-10 minutes

Required Training

No Training

Age Ranges

Preschool

2 - 5

years

Child

6 - 12

years

Adolescent

13 - 17

years

Instrument Reviewers

Holly O’Hearn, SPT

Jensyn Bradley SPT, ATC, LAT

Chi-Lun Chiao, SPT

Holt McPherson, SPT

Kenna Peters, SPT

Corinne Woodbine, SPT

Duke University, School of Medicine, Division of Physical Therapy.

Body Part

Upper Extremity

ICF Domain

Body Function

Measurement Domain

Motor

Considerations

  • PROMIS measures can be used in the general population and with adults and pediatric populations with a chronic condition(s)
  • PROMIS measures have a larger range of measurement than most conventional measures, decreasing floor and ceiling effects as a result
  • PROMIS measures have fewer items than conventional measures, thereby decreasing respondent burden. When used as computer adaptive tests, PROMIS measures usually require 4-6 items for precise measurement of health-related constructs
  • Translations: The assessments are available via PDF in Spanish and can be obtained in other languages by contacting translations@Healthmeasures.net

Pediatric Disorders

back to Populations

Minimally Clinically Important Difference (MCID)

Nephrotic Syndrome: Selewski et al, 2017; n=127; Age Range=8-17; Severity= active nephrotic syndrome

  • MID = 3 points

Cut-Off Scores

Patients with Juvenile Idiopathic Arthritis (Brandon et al, 20176)

  • No Problems: >30
  • Mild Problems: 30-35
  • Moderate Problems: 24-20
  • Severe Problems: <20

Normative Data

 Patients with Juvenile Idiopathic Arthritis (Brandon et al, 2017)


No.

Full item bank, mean ± SD

Short form, mean ± SD

CAT, mean ± SD

 

Patient‐report

       

Anger

77

46.1 ± 11.1

Anxiety

77

47.3 ± 10.9

47.6 ± 10.6

47.4 ± 10.8

Depressive symptoms

75

47.0 ± 10.4

47.8 ± 9.6

47.2 ± 10.4

Fatigue

78

38.0 ± 12.3

40.2 ± 10.5

38.9 ± 11.8

Mobility

78

52.2 ± 8.9

51.8 ± 8.1

52.9 ± 7.8

Pain interference

74

46.8 ± 10.3

47.6 ± 9.9

47.0 ± 10.5

Peer relationships

76

49.0 ± 9.5

49.4 ± 9.4

49.2 ± 9.5

Upper extremity function

77

51.3 ± 8.3

51.5 ± 7.8

51.2 ± 7.8

Parent‐report

       

Anger

77

43.5 ± 10.9

Anxiety

77

48.7 ± 9.8

49.0 ± 9.7

49.1 ± 10.1

Depressive symptoms

77

47.0 ± 10.0

47.3 ± 9.3

47.1 ± 9.9

Fatigue

74

43.9 ± 11.5

45.6 ± 10.3

45.4 ± 12.2

Mobility

75

49.8 ± 8.2

49.3 ± 7.7

49.7 ± 8.4

Pain interference

71

48.5 ± 11.3

48.9 ± 10.6

48.0 ± 10.8

Peer relationships

77

48.9 ± 8.0

49.6 ± 8.2

48.9 ± 7.9

Upper extremity function

75

48.0 ± 8.6

47.9 ± 8.2

48.1 ± 8.5

Test/Retest Reliability

General population: (Varni et al, 2014; n=331; age= 12.1; General Pediatrics)

  • Excellent test-retest Reliability for short form (ICC = .71)
  • Excellent test-retest Reliability for CAT (ICC = .71)

Internal Consistency

Childhood-Onset Systemic Lupus Erythematosus (SLE)

Jones, 20176; n=100 (at visit baseline); Age=15.8 (2.2)

  •      - Excellent internal consistency for PROMIS-Short Form pooled across all visits Short Form: (Cronbach’s Alpha = 0.94)

 

General population: (Varni et al, 2014; n=331; age= 12.1; General Pediatrics)

  • Adequate internal consistency (α=.62-.63)

Criterion Validity (Predictive/Concurrent)

Childhood-Onset Systemic Lupus Erythematosus (SLE)

(Jones et al, 2017) Bivariate correlation (rpool) between pediatric PROMIS short form and legacy measure subscales

-Poor to excellent convergent validity between the PROMIS Upper Extremity Functions Short Form and the Legacy Measures

 

Legacy Measures

Upper Extremity Functions Short Form

SLEDAI‐2K

-0.12

BILAG

-0.13

MD‐global

-0.02

SDI

-0.14

Functional Disability Inventory

-0.55

PedsQL‐GC

Summary Score

0.49

Physical Function

0.50

Emotional Function

0.38

Social Function

0.38

School Function

        0.33

PedsQL‐RM

Summary score

0.51

Pain and hurt

0.44

Daily activity

0.61

Treatment

0.39

Worry

0.25

Communication

0.24

SMILEY

Summary Score

-0.14

Effect on self

-0.18

Limitations

-0.03

Social

0.38

Burden of childhood-onset SLE

-0.20

C-HAQ

Summary score

-0.74

Dressing/grooming

-0.66

Arising

-0.54

Eating

-0.74

Walking

-0.55

Hygiene

-0.67

Reach

-0.65

Play

-0.60

Grip

-0.69

CHQ-PF50

Psychosocial summary score

0.21

Physical summary score

0.37

Physical functioning

0.33

Bodily pain

0.33

General health perception

0.21

Role/social-physical

0.32

Role/social-emotional/behavioral

0.35

Self-esteem

0.19

Mental health

0.20

Behavior

0.06

Mental health

0.20

 

Children with Congenital Hand Differences

(Waljee et al, 2015; n=33; Age Range=6-17yrs)

  • Excellent correlation between the SF and CAT versions of PROMIS and the Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire scores (r=0.80,p<0.001)
  • Excellent correlation between the SF and CAT versions of PROMIS with the Pediatric Outcomes Data Collection Instrument (PODCI) domains, with the exception of sports (r=0.70,p<0.05)
  • Adequate correction between PROMIS scores and the Michigan Hand Outcomes Questionnaire (MHQ) (r=0.40, p<0.05).
  • Excellent correlation between PROMIS scores and grip strength (r=0.60, p<0.001)
  • Adequate correlation between PROMIS scores and pinch strength (r=0.50, p<0.001)

 

Pediatric Chronic Pain

(Kashikar-Zuck et al, 2016)

  • Not significantly correlated with PedsQL
  • Likely not useful in many chronic pain patients

Responsiveness

General population: (Varni et al, 2014; n=331; age= 12.1; General Pediatrics)

  • Effect size: -0.10 to -0.06

 

Childhood-Onset Systemic Lupus Erythematosus (SLE)

(Jones et al, 2017)

 

Pediatric PROMIS short form domain score change across visits and relationship to change in childhood-onset SLE, health status, and disease activity

 

Category

Upper Extremity Function Short Form

Change in Childhood-Onset SLE

Better

2.8± 1.5

Same

0.1± 1.3

Worse

-1.4± 2.0

Change in health

 

Better

2.4± 1.5

Same

-0.4± 1.3

Worse

0.1± 1.9

Change in MD-global (MD-VAS)

Better

2.2± 1.5

Same

-0.4± 0.8

Worse

2.9± 1.8

Change in SLEDAI-2K

Better

1.8± 1.4

Same

-0.2± 0.8

Worse

0.8± 1.6

Change in BILAG

Better

3.1± 1.1

Same

-1.0± 0.9

Worse

-0.4± 1.3

Bibliography

Brandon, T. G., Becker, B. D., Bevans, K. B., Weiss, P. F. (2017). Patient Reported Outcomes Measurement Information System Tools for Collecting Patient Reported Outcomes in Children With Juvenile Arthritis. Arthritis care & research, 69(3), 393–402. doi:10.1002/acr.22937

 

Howell, C.R., Thompson, L.A., Gross, H.E., Reeve, B.B., DeWalt, D.A, Huang I-C. (2016). Responsiveness to Change in PROMIS® Measures among Children with Asthma: A Report from the PROMIS Pediatric Asthma Study. Value Health, 19(2), 192–201 doi:10.1016/j.jval.2015.12.004

 

Jones, J.T., Carle, A.C., Wootton, J., Liberio, B., Lee, J., Schanberg, L.E., Ying, J., Dewitt, E.M., Brunner, H.I. (2017). Validation of Patient-Reported Outcomes Measurement Information System Short Forms for Use in Childhood-Onset Systemic Lupus Erythematosus. Arthritis care & research, 69(1), 133–142. doi:10.1002/acr.22927

 

Selewski, D. T., Troost, J. P., Cummings, D., Massengill, S. F., Gbadegesin, R. A., Greenbaum, L. A.,Shatat, I.F., Cai, Y., Kapur, G., Herbert, D., Somers, M.J., Trachtman, H., Pais, P., Seifert, M.E., Goebel, J., Sethna, C.B., Mahan, J.D., Gross, H.E., Herreschoff, E. Liu, Y., Carlozzi, N.E., Reeve, B.B., Dewalt, D. A.,  Gipson, D. S. (2017). Responsiveness of the PROMIS® measures to changes in disease status among pediatric nephrotic syndrome patients: a Midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes, 15(1), 166. doi:10.1186/s12955-017-0737-2

 

Varni, J. W., Magnus, B., Stucky, B. D., Liu, Y., Quinn, H., Thissen, D., Gross, H.E., Huang, I.C.,Dewalt, D. A. (2014). Psychometric properties of the PROMIS pediatric scales: Precision, stability, and comparison of different scoring and administration options. Quality of Life Research, 23(4), 1233-43. doi:http://dx.doi.org.proxy.lib.duke.edu/10.1007/s11136-013-0544-0

 

Waljee, J. F., Carlozzi, N., Franzblau, L. E., Zhong, L., & Chung, K. C. (2015). Applying the Patient-Reported Outcomes Measurement Information System to Assess Upper Extremity Function among Children with Congenital Hand Differences. Plastic and Reconstructive Ssurgery, 136(2), 200e–207e. doi:10.1097/PRS.0000000000001444