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Ability of PROMIS Pediatric Measures to Detect Change in Children With Cerebral Palsy Undergoing Musculoskeletal
Mary J Mulcahey1, Stephen M Haley, Mary D Slavin
1*Department of Occupational Therapy, School of Health Professions, Thomas Jefferson University, Philadelphia, PA †Boston University School of Public Health, Health and Disability Research Institute, Boston, MA ‡Department of Physical Therapy, College of Health Sciences, University of Delaware, Newark, DE §Kessler Foundation Research Center, West Orange, NJ.
Insights
Patient-Reported Outcomes Measurement Information System (PROMIS) measures showed limited ability to detect changes in children with cerebral palsy post-surgery. Alternative instruments like PedsQL CP demonstrated greater sensitivity in capturing functional improvements.
Area of Science:
- Orthopedics
- Pediatric Rehabilitation
- Health Outcomes Research
Background:
- The Patient Reported Outcomes Measurement Information System (PROMIS) was developed for universally relevant, low-burden, precise patient-reported outcome measures.
- Cerebral palsy (CP) research and practice lack outcome instruments suitable for its diverse abilities and age spectrum.
- This study investigated the utility of PROMIS pediatric measures in children with CP undergoing surgery.
Purpose of the Study:
- To evaluate how PROMIS pediatric computer adaptive tests and short forms detect changes in children with CP after elective musculoskeletal surgery.
- To compare the performance of PROMIS instruments against established measures: PedsQL CP, PODCI, TUG, and GMFM.
Main Methods:
- PROMIS pediatric measures, PedsQL CP, PODCI, TUG, and GMFM were administered pre- and post-surgery.
- Effect size (ES) and standardized response mean (SRM) were calculated to assess change detection.
- Floor/ceiling effects and PROMIS item bank exposure rates were analyzed.
Main Results:
- PROMIS pediatric measures showed nonsignificant effect sizes and standardized response means.
- PedsQL CP detected significant improvements in mobility, pain, and fatigue.
- PODCI, GMFM, and TUG indicated significant negative changes, suggesting potential declines or limitations not captured positively by PROMIS.
Conclusions:
- PROMIS measures demonstrated lower sensitivity in detecting change in pediatric CP patients post-surgery compared to other instruments.
- Enhancements to PROMIS, such as tailored rules or additional items for mobility impairments, may improve its utility in this population.
Background:
The Patient Reported Outcomes Measurement Information System (PROMIS) was developed to provide patient-reported outcome measures that are designed as being universally relevant across health conditions, low burden, and precise. A major problem for research and clinical practice in cerebral palsy (CP) is the void of outcomes instruments that are capable of evaluating the wide range of abilities and broad age spectrum inherent in this clinical population. Given the tremendous potential of PROMIS, the research questions for this study were "How do PROMIS pediatric computer adaptive tests and short forms detect change in children with CP following elective musculoskeletal surgery?" and "How do PROMIS instruments compare to the Pediatric Quality of Life Inventory Cerebral Palsy Module Version 3.0 (PedsQL CP), Pediatric Outcomes Data Collection Instrument (PODCI), the Timed Up and Go (TUG), and the Gross Motor Functional Measure (GMFM)."
Methods:
PROMIS Pediatric computer adaptive tests and short forms and the PedsQL, PODCI, TUG, and GMFM were administered before and after surgery. Effect size (ES) and standardized response mean (SRM) were calculated. Floor and ceiling effects were evaluated and, exposure rates for the PROMIS item banks were examined.
Results:
ES and SRM for all PROMIS Pediatric Measures were nonsignificant. PedsQL CP detected significant, positive change in mobility at 6 (ES=0.26; SRM=0.31) and 12 (ES=0.36; SRM=0.36) months; pain at 12 months (ES=0.29; SRM=0.34); and fatigue at 6 (ES=0.24; SRM=0.22) and 12 (ES=0.36; SRM=0.41) months. Significant negative changes were detected by the PODCI (ES=-0.20; SRM=-0.26), GMFM (ES=-0.13; SRM=-0.24), and TUG (ES=-0.29; SRM=-0.25). Ceiling effects were high. Exposure to an appropriate range of the PROMIS Mobility item bank was limited.
Conclusions:
PROMIS measures were less able to detect change than other measures. PROMIS measures may be improved by tailoring start/stop rules or by adding items to include content appropriate for children with mobility impairments.
Level Of Evidence:
Level III-diagnostic study.
