Patient-Reported Outcomes Measurement Information System Pediatric Bank - Upper Extremity

Instrument Name: Patient-Reported Outcomes Measurement Information System Pediatric Bank - Upper Extremity

Abbreviation: PROMIS Pediatric Bank - Upper Extremity

Points for Consideration:

Low number of publications

Description of Tool:

The PROMIS Pediatric Strength Impact scale is a PRO containing 34 items designed to assess the use of the upper extremity, incluing shoulder, arm, and hand activities.

Minimum Qualification Required by COA Administrator: No degree requirement

Year: 2011

Objective of Development:

To assess the use of the upper extremity including shoulder, arm, and hand activities

Population of Development: Age range (therapeutic indication):

8-17 years (All)

Pediatric Population(s) in which COA has been used:

Nervous System Diseases; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Nutritional and Metabolic Diseases; Musculoskeletal Diseases; Respiratory Tract Diseases; Male Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Hemic and Lymphatic Diseases; Wounds and Injuries

COA type:

Number of Items 34 items

Mode of Administration:

Data Collection Mode:

Time for Completion: Not reported

Response Scales: 5-point verbal rating scale Scale ranging from "Not able to do" to "With No trouble"

Summary of Scoring:

Available Scores:
Global Score based on T-score conversion

Weighting:
No

Score Interpretation:
Higher score = Better upper extremity mobility

Evidence of Literature Review: Yes

Evidence of Instrument Review: Yes

Evidence of Clinical or Expert Input: Yes

Evidence of concept elicitation in target patient population: Yes

Evidence of a Saturation Grid: None identified

Evidence for Selection of Data Collection Method: None identified

Recall/Observation Period:

Evidence for Selection of Reponse Options: Yes

Evidence of cognitive interviewing of draft instrument in target patient population: Yes

Evidence of Preliminary Scoring of Items and Domains: Yes

Evidence related to respondent and administrator burden: None identified

Evidence of a Conceptual Framework: None identified

Evidence of an item-tracking matrix: None identified

Evidence related to item selection: Yes

Evidence of re-testing the final version: None identified

Internal consistency (Cronbach's alpha): None identified

Test-retest Reliability (ICC):

None identified

Inter-rater/ inter-interviewer reliability (kappa):

Not applicable

Evidence of test-retest or inter-rater reliability: None identified

Concurrent validity (convergent, divergent):

None identified

Known-group validity:

DeWalt DA (2015)

KNown-groups validity

Measure/Groups of patients: Difference in Upper Extremity scores between groups of children classified in groups according to their asthma control: good asthma control (n= 78) and poor asthma control (n= 59).
A combination of short and long versions were administered. None identified to distinguish between the results was given. The version number used was also Not mentioned.
A priori hypotheses: PROMIS measure would be sensitive to differences in health status
Were hypotheses confirmed: Yes
Results: t-test
Upper extremity scores were significantly higher 51(±7) in the good asthma control group than in the poor asthma control group 46(±9), t-test= 3.66; p<0.001 Population/Disease: Patients with asthma; n= 137 (mean age 12.04) Measure/Groups of patients: Difference in Upper Extremity scores between groups of children with cancer in active treatment (n= 93) or had completed cancer treatment, a survivorship group (n= 107). A combination of short and long versions were administered. None identified to distinguish between the results was given. The version number used was also Not mentioned. A priori hypotheses: PROMIS measure would be sensitive to differences in health status Were hypotheses confirmed: Yes Results: t-test Upper extremity scores were significantly higher 51(±8) in the survivorship group than in the active treatment group 46(±9), t-test= 3.56; p<0.001 Population/Disease: Patients with cancer treatment; n= 200 (mean age 12.87) Measure/Groups of patients: Difference in Upper Extremity scores between groups of children with sickle cell disease classified into two groups: those who has received home treatment for pain in the past week (n= 72) and those who had Not (n= 162). A combination of short and long versions were administered. None identified to distinguish between the results was given. The version number used was also Not mentioned. A priori hypotheses: PROMIS measure would be sensitive to differences in health status Were hypotheses confirmed: Yes Results: t-test Upper extremity scores were significantly higher 51(±7) in the No home treatment for pain in the past week group than in home treatment for pain in past week group 49(±8), t-test= 2.76; p<0.05 Population/Disease: Patients with sickle cell disease; n= 234 (mean age 12.49) Measure/Groups of patients: Difference in Upper Extremity scores (combination of short forms or complete item banks) between groups of children with pediatric kidney disease classified according to the glomerular filtration rate (eGFR) : CKD Stage 1 and 2 (eGFR ≥ 60; n= 169), CKD Stage 3 and 4 (eGFR 16-59; n= 80); CKD Stage 5 (eGFR ≤ 15; n= 26). A combination of short and long versions were administered. None identified to distinguish between the results was given. The version number used was also Not mentioned. A priori hypotheses: PROMIS measure would be sensitive to differences in health status Were hypotheses confirmed: Yes Results: ANOVA with Tukey post-hoc Upper extremity scores were significantly higher 53(±7) in the CKD Stage 1 and 2 (eGFR ≥ 60) group than in CKD Stage 5 (eGFR ≤ 15) 46(±8), F= 3.83; p<0.05 Population/Disease: Patients with chronic kidney disease ; n= 275 (mean age 13.40) Measure/Groups of patients: Difference in Upper extremity scores between groups of children which had been hospitalized one or more times in the past 6 month (n= 311) or Not (n= 813). A combination of short and long versions were administered. None identified to distinguish between the results was given. The version number used was also Not mentioned. A priori hypotheses: PROMIS scores would be higher in the group of children without hospitalization during the past 6 months Were hypotheses confirmed: Yes Results: t-test Upper extremity scores were significantly higher 51(±8) in Non-hospitalized group than in group of children with one or more hospitalizations during the past 6 months 49(±8), t-test= 4.05; p<0.001 Population/Disease: Patients with or without one or more hospitalization during the past 6 months; n= 1124 (age range 8-17; mean age Not stated) Dampier C (2016) KNown-groups validity 1- Measure/Groups of patients: Patients with current hip or joint issues (n= 40) vs patients without current hip or joint issues (n= 194) - Results: T-test; Linear Regression Modeling; all results p< 0.05. - Upper extremity scores were significanty higher in patients without current hip or joint issues (51.1, SD 7.2) than in patients with current hip or joint issues (48.1, SD 8.2) - There were significant relationships between Upper extremity scores and current hip or joint issues (Regression coefficient: -3.1, Standard Error (SE): 1.2) - Population/Disease: Children and adolescents diagNosed with Sickle Cell Disease (mean age 12.5, SD 2.8); n= 234 2- Measure/Groups of patients: Patients who experienced pain at home in the past 7 days (n= 72) vs patients who did Not experience pain at home in the past 7 days (n= 162) - Results: T-test; Linear Regression Modeling - Upper extremity scores were significanty higher in patients who did Not experience pain (51.4, SD 6.6) than in patients who experienced pain (48.5, SD 8.3); p< 0.01 - There were significant relationships between Upper extremity scores and pain in the past 7 days (Regression coefficient: -2.6, SE: 1.0) - Population/Disease: Children and adolescents diagNosed with Sickle Cell Disease (mean age 12.5, SD 2.8); n= 234

Evidence of Translatability Assessment: None identified

Evidence related to missing data: Dampier C_Jaeger B (2016) Measure completion was excellent when supervised by study staff in the clinical care setting using provided laptops/tablets for accessing the study Web site over the hospital wireless Internet access system. For a number of reasons, some children were unable to return for follow-up clinic visits and their completion of recovery assessments was limited. Those participants unable to return to clinic were encouraged to complete the measures over the Internet using the study Web site. However, completion rates improved when PROMIS pediatric short forms in paper format were mailed to homes suggesting that some children/families in our sample had limited computer resources or Internet access at home, or found our study Web site difficult to use without assistance. Determining subject preferences for assessment response format at study entry might improve response rates.

Evidence for Selection of Recall Period: Yes

Evidence of Administration Instructions and Training Provided: None identified

Evidence of concurrent validity: None identified

Evidence of known-groups validity: Yes

Evidence of ability to detect change over time: Yes

Ability to detect change (Responsiveness):

Reeve BB (2018)
- Population/Disease: Children 8–17 years with cancer (n= 96), and Sickle Cell Disease (n= 121)
- Time horizon: Assessment points based on disease events (T2)
- Statistics used: Linear Mixed Models
Results: Mean scores worsened from T1 (baseline) to T2 (event) (p < 0.05) as expected, and significantly improved from T2 to T3 (b= 3.1; p< 0.01) and from T2 to T4 (p < 0.05). - Magnitude of change: The MID of 3 points was exceeded going from T2 to T3 and from T2 to T4. Reeve BB (2016) - Population/Disease: Children 8–18 years with cancer (n= 90), Nephrotic Syndomre (n= 114) and Sickle Cell Disease (n= 88) - Time horizon: Assessment points based on disease events (T2) - Statistics used: Linear Mixed Models Results: Relative to T2, mean scores were significantly improved at T1, T3 and T4 (p< 0.05) - Magnitude of change: mean improvement of 2.55 to 6.40 points Dampier C_Jaeger B (2016) - Population/Disease: 21 children diagNosed with Sickle Cell Disease (mean age 12.5 (SD 3.1)) - Time horizon: Pain hospitalization (16.6 ± 19.1 months from baseline visit) - Statistics used: Generalized Linear Model Results: Upper extremity scores significantly decreased during pain hospitalization in comparison to scores from the initial clinic visits (p< 0.01) - Magnitude of change: Mean difference –5.1 (Standard Error: 1.6)

Evidence of responder thresholds: None identified

Dampier, C., Barry, V., Gross, H.E., Lui, Y., Thornburg, C.D., DeWalt, D.A. and Reeve, B.B. (2016), Initial Evaluation of the Pediatric PROMIS® Health Domains in Children and Adolescents With Sickle Cell Disease. Pediatr Blood Cancer, 63: 1031-1037 (https://onlinelibrary.wiley.com/doi/full/10.1002/pbc.25944)

Dampier C, Jaeger B, Gross HE, et al. Responsiveness of PROMIS® Pediatric Measures to Hospitalizations for Sickle Pain and Subsequent Recovery. Pediatr Blood Cancer. 2016;63(6):1038-1045. doi:10.1002/pbc.25931 (https://onlinelibrary.wiley.com/doi/full/10.1002/pbc.25931)

DeWalt DA, Rothrock N, Yount S. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007 May;45(5 Suppl 1):S12-21. (Full Text Article) (https://pubmed.ncbi.nlm.nih.gov/17443114/)

DeWalt DA, Gross HE, Gipson DS. PROMIS(®) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Qual Life Res. 2015 Sep;24(9):2195-208. (Full Text Article) (https://pubmed.ncbi.nlm.nih.gov/25715946/)

DeWitt EM, Stucky BD, Thissen D. Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: built using item response theory. J Clin Epidemiol. 2011 Jul;64(7):794-804. (Full Text Article) (https://pubmed.ncbi.nlm.nih.gov/21292444/)

Irwin DE, Varni JW, Yeatts K. Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study. Health Qual Life Outcomes. 2009 Jan 23;7:3. (Full Text Article) (https://pubmed.ncbi.nlm.nih.gov/19166601/)

Irwin DE, Stucky BD, Thissen D. Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Qual Life Res. 2010 May;19(4):585-94. (Full Text Article) (https://pubmed.ncbi.nlm.nih.gov/20204706/)

Reeve, B.B., Edwards, L.J., Jaeger, B.C. et al. Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease. Qual Life Res 27, 249–257 (2018)

[Conference Abstract] Reeve B.B., Edwards L.J., Jaeger B.C., et al Assessing responsiveness over time of the PROMIS pediatric health-related quality of life measures in 3 chronic diseases. Qual. Life Res.. 2016;25(1 Supplement 1):47-48

Quinn, H., Thissen, D., Liu, Y. et al. Using item response theory to enrich and expand the PROMIS® pediatric self report banks. Health Qual Life Outcomes 12, 160 (2014) (https://hqlo.biomedcentral.com/articles/10.1186/s12955-014-0160-x)

Walsh TR, Irwin DE, Meier A. The use of focus groups in the development of the PROMIS pediatrics item bank. Qual Life Res. 2008 Jun;17(5):725-35. (Full Text Article) (https://pubmed.ncbi.nlm.nih.gov/18427951/)

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Original Language: English for the USA

Translations:
Dutch-Flemish for the Netherlands and Flanders
Spanish

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