Leveraging pediatric PROMIS item banks to assess physical functioning in children at risk for severe functional loss.

Journal of Patient-reported Outcomes
Angie Mae RoddaySusan K Parsons

Abstract

Pediatric neuromuscular illnesses often result in decreased health-related quality of life (HRQL), notably in physical functioning. Generic HRQL measures have been developed for use in general populations, but may not adequately assess patients with severe functional loss. To address this measurement gap, we created two custom parent-proxy physical functioning short forms for use among children at risk for low levels of functioning, using pediatric Patient Reported Outcomes Measurement Information System (PROMIS) item banks for Upper Extremity and Mobility. Two custom short forms from PROMIS Upper Extremity (13 items) and Mobility (13 items) parent-proxy item banks were created and administered to parents of children (ages 5 - 22 years) enrolled in an integrated care program for management of chronic respiratory insufficiency, largely due to neuromuscular illnesses. Standardized PROMIS T-scores have a mean of 50 (SD = 10); higher scores indicate better functioning. Physicians rated clinical severity. Single proxy-rated items on mental and physical health from the Child Health Rating Inventories (CHRIs) global health scale were completed by parents. Psychometric properties, including known groups comparisons, were explored. Fift...Continue Reading

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Citations

Dec 17, 2019·Orthopaedic Journal of Sports Medicine·Joshua AdjeiPeter D Fabricant
Jan 1, 2021·HSS Journal : the Musculoskeletal Journal of Hospital for Special Surgery·Joshua AdjeiPeter D Fabricant
May 8, 2020·Complementary Therapies in Clinical Practice·Joel AlcantaraJunjoe Alcantara

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Methods Mentioned

BETA
SMA

Software Mentioned

PROMIS
SAS
PEDI
CAT

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