Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement

Autor: David L. Streiner, Peter Rosenbaum, Gabriel M. Ronen
Rok vydání: 2021
Předmět:
Zdroj: Developmental Medicine & Child Neurology. 64:149-155
ISSN: 1469-8749
0012-1622
DOI: 10.1111/dmcn.14954
Popis: This review explores children's self-reported outcome measurements in pediatric neurology. We examine the following questions: (1) What is meant by patient-reported health, functioning, and quality of life outcomes? (2) How can patients express whether the interventions they receive do more good than harm? (3) Why and how should pediatric neurology patients help determine the outcomes of interest? (4) What tools and recommendations are available to evaluate the outcomes of interest? Applying patients' perspectives across the processes of evaluation of medical interventions has become an important expectation. These developments, consistent with current healthcare goals, coincide with the evolution of pediatric neurology into a sophisticated diagnostic-interventional field that aims to prolong survival, decrease impairments and symptoms, and improve patients' well-being - the recognized essential endpoints of interest in all medicine. What this paper adds Health endpoint indicators are expanding beyond 'objective' parameters measured by professionals to include patient-reported outcomes. Evidence supports the capability of children as young as 8 years with impairments to report their own health and quality of life. Systematic use of patient-reported outcome measures (PROMs) can help patients and clinicians make better decisions. There is considerable variation in the quality of PROMs, mostly related to conceptual issues, content validity, or the way items are phrased.
Databáze: OpenAIRE
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