Psychometric Performance of a New Condition-Specific Preference-Weighted Measure, Vision Impairment in Low Luminance-Utility Index, and EQ-5D-5L in Patients With Age-Related Macular Degeneration: A MACUSTAR Study Report

Rowen, D.; Carlton, J.; McDool, E.; Holz, F. G.; Zakaria, N.; Terheyden, J. H.; Finger, R. P.; Agostini, H.; Aires, I. D.; Altay, L.; Atia, R.; Bandello, F.; Basile, P. G.; Batuca, J.; Behning, C.; Belmouhand, M.; Berger, M.; Binns, A.; Boon, C. J. F.; Böttger, M.; Brazier, J. E.; Carapezzi, C.; Carlton, J.; Carneiro, A.; Charil, A.; Coimbra, R.; Cosette, D.; Cozzi, M.; Crabb, D. P.; Cunha-Vaz, J.; Dahlke, C.; Dunbar, H.; Finger, R. P.; Fletcher, E.; Gutfleisch, M.; Hartgers, F.; Higgins, B.; Hildebrandt, J.; Höck, E.; Hogg, R.; Holz, F. G.; Hoyng, C. B.; Kilani, A.; Krätzschmar, J.; Kühlewein, L.; Larsen, M.; Leal, S.; Lechanteur, Y. T. E.; Lu, D.; Luhmann, U. F. O.; Lüning, A.; Manivannan, N.; Marques, I.; Martinho, C.; Miliu, A.; Moll, K. P.; Mulyukov, Z.; Paques, M.; Parodi, B.; Parravano, M.; Penas, S.; Peters, T.; Peto, T.; Priglinger, S.; Ramamirtham, R.; Ribeiro, R.; Rowen, D.; Rubin, G. S.; Sahel, J.; Sánchez, C.; Sander, O.; Saßmannshausen, M.; Schmid, M.; Schmitz-Valckenberg, S.; Siedlecki, J.; Silva, R.; Souied, E.; Staurenghi, G.; Tavares, J.; Taylor, D. J.; Terheyden, J. H.; Tufail, A.; Valmaggia, P.; Varano, M.; Wolf, A.; Zakaria, N.

Psychometric Performance of a New Condition-Specific Preference-Weighted Measure, Vision Impairment in Low Luminance-Utility Index, and EQ-5D-5L in Patients With Age-Related Macular Degeneration: A MACUSTAR Study Report

Rowen, D., Carlton, J., McDool, E. , Holz, F. G., Zakaria, N., Terheyden, J. H., Finger, R. P., Agostini, H., Aires, I. D., Altay, L., Atia, R., Bandello, F., Basile, P. G., Batuca, J., Behning, C., Belmouhand, M., Berger, M., Binns, A. ORCID: 0000-0001-8621-498X, Boon, C. J. F., Böttger, M., Brazier, J. E., Carapezzi, C., Carlton, J., Carneiro, A., Charil, A., Coimbra, R., Cosette, D., Cozzi, M., Crabb, D. P. ORCID: 0000-0001-8754-3902, Cunha-Vaz, J., Dahlke, C., Dunbar, H., Finger, R. P., Fletcher, E., Gutfleisch, M., Hartgers, F., Higgins, B. ORCID: 0000-0002-4530-6156, Hildebrandt, J., Höck, E., Hogg, R., Holz, F. G., Hoyng, C. B., Kilani, A., Krätzschmar, J., Kühlewein, L., Larsen, M., Leal, S., Lechanteur, Y. T. E., Lu, D., Luhmann, U. F. O., Lüning, A., Manivannan, N., Marques, I., Martinho, C., Miliu, A., Moll, K. P., Mulyukov, Z., Paques, M., Parodi, B., Parravano, M., Penas, S., Peters, T., Peto, T., Priglinger, S., Ramamirtham, R., Ribeiro, R., Rowen, D., Rubin, G. S., Sahel, J., Sánchez, C., Sander, O., Saßmannshausen, M., Schmid, M., Schmitz-Valckenberg, S., Siedlecki, J., Silva, R., Souied, E., Staurenghi, G., Tavares, J., Taylor, D. J., Terheyden, J. H., Tufail, A., Valmaggia, P., Varano, M., Wolf, A. & Zakaria, N. (2025). Psychometric Performance of a New Condition-Specific Preference-Weighted Measure, Vision Impairment in Low Luminance-Utility Index, and EQ-5D-5L in Patients With Age-Related Macular Degeneration: A MACUSTAR Study Report. Value in Health, 28(7), pp. 1082-1090. doi: 10.1016/j.jval.2025.04.2155

Abstract

Aims
The Vision Impairment in Low Luminance-Utility Index (VILL-UI) is a novel preference-weighted measure for use in patients with age-related macular degeneration (AMD). No evidence exists on its psychometric performance, nor its performance in comparison to generic preference-weighted measure, EQ-5D-5L commonly used in economic evaluation. This study compares the psychometric performance of VILL-UI and EQ-5D-5L in patients with AMD.

Methods
Assessments of feasibility, convergent/divergent validity and known-group validity of VILL-UI and EQ-5D-5L are undertaken using MACUSTAR data at baseline, 12, 24 and 36 months. Analyses are undertaken separately using UK and German preference weights for both measures.

Results
The sample with complete responses (n=586) had mean age 71.9 years (standard deviation 6.9), 65.2% women, with predominantly intermediate AMD (87.2%). VILL-UI and EQ-5D-5L are feasible for completion, though VILL-UI has fewer usable responses due to its response options (baseline 89% vs 100%). EQ-5D-5L has high ceiling effects, with around one third of participants reporting the best health state compared to under 8% for VILL-UI. Convergent validity between EQ-5D-5L and VILL-UI utilities and dimensions where a relationship is expected is low, with divergent validity demonstrated where expected. VILL-UI detected statistically significant differences in known-groups for visual acuity, visual function and AMD stage across most timepoints, with little evidence of known-group validity for EQ-5D-5L.

Conclusions
VILL-UI is appropriate for use in future AMD studies to inform economic evaluation. VILL-UI has superior performance to EQ-5D-5L for known-group validity and has fewer ceiling effects, but has fewer usable responses.

Publication Type:	Article
Additional Information:	© 2025 The Authors.
Publisher Keywords:	MACUSTAR Consortium, Humans, Vision Disorders, Macular Degeneration, Feasibility Studies, Reproducibility of Results, Psychometrics, Visual Acuity, Quality of Life, Aged, Aged, 80 and over, Middle Aged, Germany, Female, Male, Surveys and Questionnaires, United Kingdom, EQ-5D-5L, VILL-UI, age-related macular degeneration, psychometrics, Humans, Female, Macular Degeneration, Aged, Psychometrics, Male, Quality of Life, Reproducibility of Results, Vision Disorders, Surveys and Questionnaires, Middle Aged, Aged, 80 and over, United Kingdom, Visual Acuity, Feasibility Studies, Germany, 1117 Public Health and Health Services, 1402 Applied Economics, Health Policy & Services, 3801 Applied economics, 4203 Health services and systems, 4407 Policy and administration
Subjects:	R Medicine > RE Ophthalmology
Departments:	School of Health & Medical Sciences School of Health & Medical Sciences > Department of Optometry & Visual Science
SWORD Depositor:	Symplectic Administrator

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Creators:	Rowen, D. Carlton, J. McDool, E. Holz, F. G. Zakaria, N. Terheyden, J. H. Finger, R. P. Agostini, H. Aires, I. D. Altay, L. Atia, R. Bandello, F. Basile, P. G. Batuca, J. Behning, C. Belmouhand, M. Berger, M. Binns, A. ORCID: 0000-0001-8621-498X Boon, C. J. F. Böttger, M. Brazier, J. E. Carapezzi, C. Carlton, J. Carneiro, A. Charil, A. Coimbra, R. Cosette, D. Cozzi, M. Crabb, D. P. ORCID: 0000-0001-8754-3902 Cunha-Vaz, J. Dahlke, C. Dunbar, H. Finger, R. P. Fletcher, E. Gutfleisch, M. Hartgers, F. Higgins, B. ORCID: 0000-0002-4530-6156 Hildebrandt, J. Höck, E. Hogg, R. Holz, F. G. Hoyng, C. B. Kilani, A. Krätzschmar, J. Kühlewein, L. Larsen, M. Leal, S. Lechanteur, Y. T. E. Lu, D. Luhmann, U. F. O. Lüning, A. Manivannan, N. Marques, I. Martinho, C. Miliu, A. Moll, K. P. Mulyukov, Z. Paques, M. Parodi, B. Parravano, M. Penas, S. Peters, T. Peto, T. Priglinger, S. Ramamirtham, R. Ribeiro, R. Rowen, D. Rubin, G. S. Sahel, J. Sánchez, C. Sander, O. Saßmannshausen, M. Schmid, M. Schmitz-Valckenberg, S. Siedlecki, J. Silva, R. Souied, E. Staurenghi, G. Tavares, J. Taylor, D. J. Terheyden, J. H. Tufail, A. Valmaggia, P. Varano, M. Wolf, A. Zakaria, N.
Status:	Published
Refereed:	Yes
Journal or Publication Title:	Value in Health
Publisher:	Elsevier BV
ISSN:	1098-3015
e-ISSN:	1524-4733
URI:	https://openaccess.city.ac.uk/id/eprint/36831
Date available in CRO:	13 Feb 2026 13:08
Date deposited:	13 February 2026
Dates:	Date Event 31 July 2025 Published 26 April 2025 Published Online 11 April 2025 Accepted