Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement. (6th June 2021)

• Record Type: Journal Article
• Authors: Ronen, Gabriel M; Rosenbaum, Peter L; Streiner, David L
• Is Part Of: Developmental medicine & child neurology. Volume 64:Number 2(2022)
• Page Start: 149
• Page End: 155
• Publication Date: 2021-06-06
• Subjects: Child development -- Periodicals; Pediatric neurology -- Periodicals; 616.8
• DOI: 10.1111/dmcn.14954
• Languages: English
• ISSNs: 0012-1622

Abstract

Abstract : 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. Abstract : This invited review is commented by Basu on page 143 of this issue.