COSMIN database

Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies

Authors:
Janssens, A., Rogers, M., Gumm, R., Jenkinson, C., Tennant, A., Logan, S., and Morris, C.
Abstract:
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.
DOI:
10.1111/dmcn.12982
URL:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5031226/pdf/DMCN-58-437.pdf
Journal:
Dev Med Child Neurol
issn:
1469-8749 (Electronic); 0012-1622 (Linking)
Publication year:
2016
pages:
437-51
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
Age:
Children (0-18)
Disease:
Diseases of and symptoms related to the nervous system
Mental and behavioural disorders and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
BMSLSS - Brief Multi-dimensional Student Life Satisfaction Scale
CHIP-CE/CRF - Child Health and Illness Profile Child-Edition, Child Report Form
CHIP-CE/PRF - Child Health and Illness Profile Child-Edition, Parent Report Form
CHQ-CF87 - Child Health Questionnaire-Child Form 87
CHQ-PF28 - Child Health Questionnaire Parent Form 28
CHQ-PF50 - Child Health Questionnaire – Parent Form 50
CHSCS-PS - Comprehensive Health Status Classification System – Preschool
CQOL - Child Quality of Life Questionnaire
DCGM - DISABKIDS Chronic Generic Measure
DISABKIDS Smileys-6 - DISABKIDS Smiley Measure
EQ-5D-Y - European Quality of Life-5 Dimensions (youth version), 5 item
HUI-2 - Health Utilities Index Mark 2
HUI-3 - Health Utilities Index-Mark 3
KIDSCREEN-10 Index Score - 10-item Screening for, and Promotion of, Health-Related Quality of Life in Children and Adolescents
KIDSCREEN - 52 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-52 items
Neuro-QOL - Neurology Quality of Life Measurement System
PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales
PedsQL Infant Scales - Pediatric Quality Of Life Inventory Trade Mark 4.0 – Infant Scales
PedsQL SF15 Generic Core Scales - Pediatric Quality Of Life Inventory Trade Mark 4.0 – Short Form 15
SLSS - Student Life Satisfaction Scale
YQOL-R - Youth Quality of Life Instrument-Research version
YQoL-S - Youth Quality of Life instrument – Surveillance version