Generic preference-based health-related quality of life in children with neurodevelopmental disorders: a scoping...

Area of Science:

• Pediatric Health Research
• Quality of Life Measurement
• Neurodevelopmental Disorders

Background:

• Generic preference-based health-related quality of life (HRQoL) instruments are valuable for assessing patient well-being.
• Children with neurodevelopmental disorders (NDD) represent a population where HRQoL assessment is crucial but challenging.
• The application and validation of these instruments in pediatric NDD populations require careful consideration.

Purpose of the Study:

• To systematically review the utilization of generic preference-based HRQoL instruments in research concerning children with NDD.
• To identify the most commonly used instruments and their application contexts within this population.
• To highlight gaps and challenges in the current use of these measures.

Main Methods:

• A systematic literature search was conducted across nine databases.
• Studies employing generic preference-based HRQoL instruments in children with NDD were identified.
• Data extraction followed PRISMA-Scoping guidelines, focusing on NDD type, instrument, respondent, justification, and appraisal.

Main Results:

• Thirty-six studies were included, encompassing various research types (e.g., HRQoL assessments, cost-utility analyses).
• The Health Utilities Index and EuroQoL 5D (EQ-5D) were the most frequently used instruments.
• Low overall usage may stem from limited psychometric evidence, inconsistent justification, unclear respondent types, and geographical limitations.

Conclusions:

• There is a significant dearth of studies utilizing generic preference-based HRQoL instruments in pediatric NDD research.
• The application of cost-utility analyses remains limited, underscoring a need for further economic evaluations.
• Validation of these instruments for children with NDD is essential, and data quality must be critically assessed for policy and care decisions.