Development of the International Classification of Functioning, Disability and Health Core Set for Vision Loss: Insights From the Lived Experience of People With Vision Loss

Lorenzo Billiet; Hilde P A van der Aa; Dominique Van de Velde; Ferhat Esatbeyoglu; Raba Thapa; Vijaya K Gothwal; Stijn De Baets; Ruth M A van Nispen

doi:10.1007/s44402-026-00031-5

Development of the International Classification of Functioning, Disability and Health Core Set for Vision Loss: Insights From the Lived Experience of People With Vision Loss

Ophthalmic Physiol Opt. 2026 Mar 6. doi: 10.1007/s44402-026-00031-5. Online ahead of print.

Authors

Lorenzo Billiet^{1

2

3

4}, Hilde P A van der Aa^{5

6}, Dominique Van de Velde⁷, Ferhat Esatbeyoglu⁸, Raba Thapa⁹, Vijaya K Gothwal¹⁰, Stijn De Baets^{7

11}, Ruth M A van Nispen^{5

12}

Affiliations

¹ Department of Ophthalmology, Amsterdam UMC, location Vrije Universiteit, Amsterdam, The Netherlands. l.billiet@amsterdamumc.nl.
² Quality of Care, Amsterdam Public Health, Amsterdam, The Netherlands. l.billiet@amsterdamumc.nl.
³ Department of Rehabilitation Sciences - Occupational Therapy Research Group, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium. l.billiet@amsterdamumc.nl.
⁴ Blindenzorg Licht en Liefde, Varsenare, Belgium. l.billiet@amsterdamumc.nl.
⁵ Department of Ophthalmology, Amsterdam UMC, location Vrije Universiteit, Amsterdam, The Netherlands.
⁶ The Lighthouse Guild, New York, NY, USA.
⁷ Department of Rehabilitation Sciences - Occupational Therapy Research Group, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.
⁸ Department of Physical Education and Sport Teaching, Faculty of Sport Sciences, Yozgat Bozok University, Yozgat, Turkey.
⁹ Tilganga Institute of Ophthalmology, Kathmandu, Nepal.
¹⁰ Meera and L B Deshpande Centre for Sight Enhancement, Institute for Vision Rehabilitation, Hyderabad, India.
¹¹ Faculty of Medicine and Pharmacy, Vrije Universiteit Brussel, Brussels, Belgium.
¹² Quality of Care, Amsterdam Public Health, Amsterdam, The Netherlands.

PMID: 41790180
DOI: 10.1007/s44402-026-00031-5

Abstract

Objective: The global increase in life expectancy has led to more visual impairment, significantly impacting the quality of life and daily activities of individuals living across the world's continents. This study aims to develop an ICF Core Set Vision Loss for the adult life span, providing a global perspective on the functional challenges faced by individuals with vision impairment. As part of its development, the aim was to understand the impact of vision loss on the lives and functioning of individuals with vision impairment from their own perspectives.

Method: A cross-sectional qualitative study was performed, using a thematic analysis of data that was gathered through an online survey across the six World Health Organization regions and in-depth interviews. Meaningful concepts were linked to the ICF categories based on available linking rules.

Results: Analyses of the online surveys with 663 participants in 59 countries and 100 in-depth interviews in Nepal and India resulted in 7652 meaningful concepts that could be linked to 148 ICF categories: 9% related to body functions and structures, 49% to activities and participation and 42% to environmental factors. Key findings regarding body functions and structures included a focus on emotional functions, confidence and energy levels. For activities and participation, major concerns were recreation, transportation and employment. Environmental factors highlighted the importance of family and technology.

Conclusion: This study underscores the complex challenges faced by individuals with vision loss, encompassing emotional, psychological, environmental and participation-related aspects. These insights highlight the need for tailored assessments, interventions and comprehensive support systems. By comparing these findings with those from other preparatory studies, these results contribute to a deeper understanding of the lived experience of vision loss and provide an essential step in the future development of the ICF Core Set for Vision Loss.

Keywords: Core Set; Disability and health; International Classification of Functioning; Low vision; Patient perspective; Vision impairment.