Video-based assessments of activities of daily living: generating real-world evidence in pediatric rare diseases.
Journal:
Expert review of pharmacoeconomics & outcomes research
PMID:
38789406
Abstract
INTRODUCTION: Preserving function and independence to perform activities of daily living (ADL) is critical for patients and carers to manage the burden of care and improve quality of life. In children living with rare diseases, video recording ADLs offer the opportunity to collect the patients' experience in a real-life setting and accurately reflect treatment effectiveness on outcomes that matter to patients and families.