Wen-Hung Chen, AstraZeneca

Lori D. McLeod, RTI Health Solutions

Globally, regulatory and health technology assessment (HTA) bodies recognise the importance of hearing from patients when products are being developed and evaluated. Patient-reported outcomes and other clinical outcome assessments are increasingly included in submissions to these bodies. Additionally, recent regulatory guidance also discusses the collection of patient preference information. This broader conceptualisation can be termed 'patient experience data' (PED).

Despite this recognition, patient experience data are inconsistently included and evaluated by decision-makers. Understanding how different interest-holders approach this is essential for ensuring that patients' voices drive healthcare decisions to ultimately improve patient outcomes and health-related quality of life.

This article collection encourages submissions that consider the assessment of patient experience, such as preference, symptoms, and health-related quality of life, to inform regulatory and HTA submissions and decisions. Submissions of original research, reviews and discussion and/or response papers addressing recent regulatory and HTA developments in the field are encouraged. Other potential topics for manuscripts may include the application of artificial intelligence and digital health technology in patient experience data research.

Potential topics

• Assessment of patient experience, preference, symptoms, and health-related quality of life to inform regulatory and HTA submissions and decisions
• Original research on patient-reported outcomes and clinical outcome assessments in regulatory submissions
• Patient preference information collection and evaluation
• Reviews and discussion papers addressing recent regulatory and HTA developments in patient experience data
• Application of artificial intelligence and digital health technology in patient experience data research

Timeline

• June 30, 2027: Submission deadline

Brittany Lapin, Cleveland Clinic

Jessica Roydhouse, Menzies Institute for Medical Research

EQ-DAPHNIE represents a landmark endeavour in population health assessment and instrument evaluation, funded by the EuroQol Research Foundation. This initiative collected demographics, social determinants of health, as well as an extensive array of generic and symptom-specific patient-reported outcome measures (PROMs) from 15 countries.

This special collection will include papers that delve into a myriad of research questions, including the establishment of population norms for various PROMs, cross-country comparisons, examination of health inequalities, assessment of instrument performance within and across countries, and specialized analyses focusing on self-reported health and the efficacy of different measures within the elderly population.

Potential topics

• Establishment of population norms for various patient-reported outcome measures (PROMs)
• Cross-country comparisons of health outcomes
• Examination of health inequalities across populations
• Assessment of instrument performance within and across countries
• Self-reported health analyses
• Efficacy of different measures within the elderly population
• Generic and symptom-specific patient-reported outcome measures

Timeline

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Jessica Roydhouse, Menzies Institute for Medical Research

Brittany Lapin, Cleveland Clinic

The Limb Injury Measurement Battery for Quality of Life (LIMB-QOL) measurement system is a multifaceted patient reported outcome system designed to measure several domains of functioning across physical, emotional, and social health for individuals with limb loss and other major extremity trauma.

The LIMB-QOL is the result of a large, collaborative project that was funded by the Congressionally Directed Medical Research Programs of the U.S. Department of Defense and overseen by the University of Delaware.

This special collection includes foundational manuscripts to introduce the LIMB-QOL measurement system to researchers and clinicians, including the development and implementation of this measurement system for individuals with major extremity injuries.

Potential topics

• Patient-reported outcomes for limb loss and extremity trauma
• Physical, emotional, and social health domains in limb injury
• Development and validation of the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL)
• Implementation of LIMB-QOL in clinical research and practice
• Measurement of functioning and quality of life in individuals with major extremity injuries

Timeline

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