Reframing QoL assessment in persons with neurodevelopmental disorders

Area of Science:

• Neuroscience
• Psychology
• Sociology

Background:

• Quality of Life (QoL) assessment for individuals with neurodevelopmental disorders (NDD) requires a nuanced theoretical framework.
• Existing assessment tools may not fully capture the multifaceted nature of QoL in this population.
• Disability significantly impacts family dynamics and necessitates a family-centered QoL perspective.

Purpose of the Study:

• To review international literature on QoL for persons with NDD.
• To define a theoretical framework for optimal QoL assessment in NDD.
• To guide the development and application of QoL assessment procedures.

Main Methods:

• Comprehensive literature review of international studies on QoL and NDD.
• Analysis of theoretical models for QoL assessment.
• Identification of key components for effective QoL evaluation.

Main Results:

• Optimal QoL assessment should integrate three core aspects: shared QoL, personal QoL, and family QoL.
• A comprehensive approach combining subjective and objective measures, self-reports, and hetero-evaluations is recommended.
• QoL assessment for individuals with NDD, including those with profound intellectual disability, can be achieved through behavioral observation and validation.

Conclusions:

• QoL assessment should be person-centered, respecting the values of individuals with NDD.
• Non-generic instruments, particularly those focused solely on health-related QoL, may perpetuate a traditional medical model.
• The proposed framework supports a holistic understanding of QoL, applicable across varying levels of functional impairment in NDD.