Broader concepts of quality of life measurement, encompassing validation

Area of Science:

• Health Outcomes Research
• Patient-Reported Outcomes
• Psychometrics

Background:

• Quality of Life (QoL) measure development necessitates considerations beyond psychometric validation.
• Effective QoL tools require integration of clinical utility and patient experience.
• Long-term management and accessibility are crucial for QoL measures.

Purpose of the Study:

• To review the development and management concepts of Quality of Life (QoL) tools from the Cardiff team.
• To inform developers of novel QoL measures and patient-reported outcome measures (PROMs) about practical considerations.
• To highlight the importance of broader concepts in QoL tool design and application.

Main Methods:

• Review of publications from the Cardiff team over the past three decades.
• Thematic grouping of concepts into tool design, practical management, and promoting understanding.
• Illustrative examples of QoL measure development and management principles.

Main Results:

• Tool Design: Emphasizes measurement ability, patient experience, clinical practicality, meaningful scores, and age-appropriateness.
• Practical Management: Covers ease of access, single-version maintenance, translation validity, and post-publication validation.
• Promoting Understanding: Includes disease severity definition, awareness of broader burden, family impact, time dimension, and 'quimp'.

Conclusions:

• Developing and managing QoL measures involves a wide array of issues beyond validation.
• A comprehensive approach considering design, practicalities, and broader understanding enhances QoL tool utility.
• The Cardiff experience offers valuable insights for future QoL and PROM development.