TY - JOUR
T1 - Measurement properties of multidimensional patient-reported outcome measures in neurodisability
T2 - a systematic review of evaluation studies
AU - Janssens, Astrid
AU - Rogers, Morwenna
AU - Gumm, Rebecca
AU - Jenkinson, Crispin
AU - Tennant, Alan
AU - Logan, Stuart
AU - Morris, Christopher
N1 - © 2015 University of Exeter. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.
PY - 2016/5
Y1 - 2016/5
N2 - AIM: To identify and appraise the quality of studies that primarily assessed the measurement properties of English language versions of multidimensional patient-reported outcome measures (PROMs) when evaluated with children with neurodisability, and to summarize this evidence.METHOD: MEDLINE, Embase, PsycINFO, CINAHL, AMED, and the National Health Service Economic Evaluation Database were searched. The methodological quality of the papers was assessed using the COnsensus-based Standards for selection of health Measurement INstruments checklist. Evidence of content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision was extracted and judged against standardized reference criteria.RESULTS: We identified 48 studies of mostly fair to good methodological quality: 37 papers for seven generic PROMs (CHIP, CHQ, CQoL, KIDSCREEN, PedsQL, SLSS, and YQOL), seven papers for two chronic-generic PROMs (DISABKIDS and Neuro-QOL), and four papers for three preference-based measures (HUI, EQ-5D-Y, and CHSCS-PS).INTERPRETATION: On the basis of this appraisal, the DISABKIDS appears to have more supportive evidence in samples of children with neurodisability. The overall lack of evidence for responsiveness and measurement error is a concern when using these instruments to measure change, or to interpret the findings of studies in which these PROMs have been used to assess change.
AB - AIM: To identify and appraise the quality of studies that primarily assessed the measurement properties of English language versions of multidimensional patient-reported outcome measures (PROMs) when evaluated with children with neurodisability, and to summarize this evidence.METHOD: MEDLINE, Embase, PsycINFO, CINAHL, AMED, and the National Health Service Economic Evaluation Database were searched. The methodological quality of the papers was assessed using the COnsensus-based Standards for selection of health Measurement INstruments checklist. Evidence of content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision was extracted and judged against standardized reference criteria.RESULTS: We identified 48 studies of mostly fair to good methodological quality: 37 papers for seven generic PROMs (CHIP, CHQ, CQoL, KIDSCREEN, PedsQL, SLSS, and YQOL), seven papers for two chronic-generic PROMs (DISABKIDS and Neuro-QOL), and four papers for three preference-based measures (HUI, EQ-5D-Y, and CHSCS-PS).INTERPRETATION: On the basis of this appraisal, the DISABKIDS appears to have more supportive evidence in samples of children with neurodisability. The overall lack of evidence for responsiveness and measurement error is a concern when using these instruments to measure change, or to interpret the findings of studies in which these PROMs have been used to assess change.
KW - Adolescent
KW - Child
KW - Child, Preschool
KW - Disabled Children/statistics & numerical data
KW - Humans
KW - Neurodevelopmental Disorders
KW - Patient Reported Outcome Measures
KW - Psychometrics/instrumentation
U2 - 10.1111/dmcn.12982
DO - 10.1111/dmcn.12982
M3 - Review article
C2 - 26661333
SN - 0012-1622
VL - 58
SP - 437
EP - 451
JO - Developmental Medicine and Child Neurology
JF - Developmental Medicine and Child Neurology
IS - 5
ER -