Tracking Functional Status Across the Spinal Cord Injury Lifespan: Linking Pediatric and Adult Patient-Reported Outcome Scores

Tian, Feng; Ni, Pengsheng; Mulcahey, M. J.; Hambleton, Ronald K.; Tulsky, David S.; Haley, Stephen M.; Jette, Alan M.

doi:10.1016/j.apmr.2014.05.023

Cited by 16 publications

(7 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Existing PROMIS® item banks could be replenished and recalibrated with items of particular relevance to CP and\or, methodology to link PROMIS® scores to scores from disease-specific item banks 34 can be developed. 35,36 …”

Section: Discussionmentioning

confidence: 99%

Ability of PROMIS Pediatric Measures to Detect Change in Children With Cerebral Palsy Undergoing Musculoskeletal Surgery

Mulcahey

Haley

Slavin

et al. 2016

Journal of Pediatric Orthopaedics

Self Cite

View full text Add to dashboard Cite

Background The Patient Reported Outcomes Measurement Information System (PROMIS®) was developed to provide patient-reported outcome (PROs) 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 (CAT) and short forms (SF) 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 CATs and SFs 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 non-significant. 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. Conclusion 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 Diagnostic Study, Level III

show abstract

Section: Discussionmentioning

confidence: 99%

Ability of PROMIS Pediatric Measures to Detect Change in Children With Cerebral Palsy Undergoing Musculoskeletal Surgery

Mulcahey

Haley

Slavin

et al. 2016

Journal of Pediatric Orthopaedics

Self Cite

View full text Add to dashboard Cite

show abstract

“…As a direct response to the limitations of existing measures and a recognized void in psychometrically sound and meaningful participation outcome instruments for youth with SCI, we developed and validated item banks of participation for pediatric SCI. 13,14 Development of the Pediatric Measure of Participation (PMoP), described in detail elsewhere, 14,15 assesses 'essential' 16 participation (feeding oneself, caring for oneself) and 'discretionary' 16 participation (having sleepovers, being on a sports team) by youth, aged 4-21 years, in home, school and community environments and includes child-and parent-reported versions. The PMoP scales were developed using Item Response Theory and evaluate participation relative to how much a child participates, based on how much he/she wants to participate (Participation-Self), and relative to how much his/her friends participate (Participation-Friend).…”

Section: Introductionmentioning

confidence: 99%

The Pediatric Measure of Participation (PMoP) short forms

Mulcahey

Slavin

et al. 2016

Spinal Cord

View full text Add to dashboard Cite

show abstract

“…Among PRO measures, researchers have linked alternate forms of similar measures of functional health status activity [6], physical functioning [7], self-regulation [8], and depression [9]. The linking of pediatric and adult PRO measures of physical functioning has been conducted, but was limited to a specific population of individuals with spinal cord injury [10]. Others have attempted linkage of disparate PRO measures, such as the Medical Outcomes Study Short Form-36 with the Louisiana State University Health Status Instruments physical functioning scales [11; 12] and the European Organization for Research and Treatment of Cancer Core Questionnaire with the Functional Assessment for Cancer Therapy – General physical, emotional, and role/functional subscales [13], and a set of eleven depression scales [14].…”

Section: Introductionmentioning

confidence: 99%