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  2. PROMIS Pediatric – Pain Interference

PROMIS Pediatric – Pain Interference

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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

Acronym PROMIS

Area of Assessment

Pain
Life Participation

Cost

Free

Actual Cost

$0.00

Cost Description

Free for short forms, $499.99 annual subscription for NIH Toolbox

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)

Populations

Pediatric Disorders

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 pain interference

Number of Items

Item Bank
Pediatric
• Item bank: 20
• Short form: 8
Parent proxy report for pediatric patients
• Item bank: 13
• 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 minutes

Required Training

No Training

Age Ranges

Preschool Children

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.

ICF Domain

Participation

Measurement Domain

General Health

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

Patients with Juvenile Idiopathic Arthritis

Pediatric PROMIS Domain

Adjacent Categories

Mean MID (SD) for pwJIA

 

Pain Interference

 

  

Mild-Moderate Problems

3.3 (3.32)

 

Moderate-Severe Problems

5.8 (3.73)

 

Severe Problems

 7.55 (4.27)

 

 

Cut-Off Scores

Patients with Juvenile Idiopathic Arthritis

Morgan et al 2017; n=4; Age Range=15-20; Severity = no problems/mild problems, mild/moderate problems, moderate/severe problems

Pediatric PROMIS Domain

Adjacent Categories

Pediatric patients with JIA Classifications

Pain Interference

No Problems

<55

Mild Problems

55-60

Moderate Problems

61-70

Severe Problems

>70

Normative Data

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

  • Baseline
    • Mean score (n=127): 49.7 (11.1)
  • Event visit [occurred after remission or 3-months post baseline]
    • Mean score (n=112): 44.9 (11.2)
  • Final visit [12-months post-baseline]
    • Mean score (n=90): 44.7 (10.9)

Construct Validity

Juvenile Idiopathic Arthritis

Brandon et al, 2017; n=265; Age=12(9-15)

  • ICC=0.80 -- Excellent correlation to parent scores for pain interference.
  • ICC=0.71-- Adequate correlation to parent scores for fatigue.
  • ICC=0.42—Adequate correlation to parent scores for peer relationships.

ICC=0.52—Adequate correlation to parent scores for anxiety.

 

Pediatric Chronic Pain

 

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

    • Adequate correlation with Peds QL Physical Functioning (ρ=-.63)
    • Adequate correlation with Peds QL Emotional Functioning (ρ=-.52)
    • Poor correlation with Peds QL Social Functioning (ρ=-.44)
    • Poor correlation with Peds QL School Functioning (ρ=-.46)
    • Adequate correlation with overall health-related QOL (ρ=-.66)

Childhood-Onset Systemic Lupus Erythematosus (SLE)

Jones, 2017; n=100 (at visit baseline); Age=15.8 (2.2)

 

 

Bivariate correlation (rpool) between pediatric PROMIS short forms and legacy measure subscalesa

Legacy measures

 

Pain

SLEDAI‐2K

 

0.16

BILAGb

 

0.21

MD‐globalc

 

0.12

SDId

 

−0.00

Functional Disability Inventory

 

0.62e

PedsQL‐GC

 

  

-Summary score

 

−0.74e

-Physical function

 

−0.68e

-Emotional function

 

−0.61e

-Social function

 

−0.54e

-School function

 

−0.66e

PedsQL‐RM

 

  

-Summary score

 

−0.72e

-Pain and hurt

 

−0.72e

-Daily activity

 

−0.54e

-Treatment

 

−0.51e

-Worry

 

−0.52e

-Communication

 

−0.44e

SMILEY

 

  

-Summary score

 

0.29

-Effect on self

 

0.39e

-Limitations

 

0.03

-Social

 

−0.54e

-Burden of childhood‐onset SLE

 

0.38e

C‐HAQ

 

  

-Summary score

 

0.45e

-Dressing/grooming

 

0.41e

-Arising

 

0.51e

-Eating

 

0.40e

-Walking

 

0.42e

-Hygiene

 

0.45e

-Reach

 

0.50e

-Play

 

0.59e

-Grip

 

0.49e

CHQ‐PF50

 

  

-Psychosocial summary score

 

−0.36e

-Physical summary score

 

−0.41e

-Physical functioning

 

−0.35e

-Bodily pain

 

−0.43e

-General health perception

 

−0.30

-Role/social‐physical

 

−0.33e

-Role/social‐emotional/behavioral

 

−0.37e

-Self‐esteem

 

−0.28

-Mental health

 

−0.38e

-Behavior

 

−0.23

-Mental health

 

−0.38e
  • a Values are the pooled correlation coefficients (rpool) across visits (n = 280 patient visits). PROMIS = Patient‐Reported Outcomes Measurement Information System; SLEDAI‐2K = Systemic Lupus Erythematosus Disease Activity Index 2000; BILAG = British Isles Lupus Assessment Group index; MD‐global = physician global disease assessment; SDI = Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index; PedsQL‐GC = Pediatric Quality of Life Generic Core Scale 4.0; PedsQL‐RM = Pediatric Quality of Life Rheumatology Module 3.0; SMILEY = Simple Measure of Impact of Lupus Erythematosus in Youngsters; C‐HAQ = Childhood Health Assessment Questionnaire; CHQ‐PF50 = Child Health Questionnaire with 50 questions.
  • b Scoring: A = 12, B = 8, C = 1, D = 0, E = 0.
  • c On a 10‐point Likert scale, where 0 = inactive disease.
  • d Range 0–47, where 0 = absence of damage.
  • e P < 0.001 and r > 0.30.

 

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

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

Morgan, E.M., Mara, C.A., Huang, B., Barnett, K., Carle, A.C., Farrell, J.E., Cook, K.F. (2017).  Establishing clinical meaning and defining important differences for Patient-Reported  Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Quality of Life Research, 26(3), 565–586. doi:10.1007/s11136-016-1468-2

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

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