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Development and Valuation of a Preference-Weighted Measure in Age-Related Macular Degeneration From the Vision Impairment in Low Luminance Questionnaire—A MACUSTAR Report

Rowen, D., Carlton, J., Terheyden, J. H. , Finger, R. P., Wickramasekera, N., Brazier, J., Agostini, H., Altay, L., Atia, R., Bandello, F., Basile, P. G., Behning, C., Belmouhand, M., Berger, M., Binns, A. ORCID: 0000-0001-8621-498X, Boon, C. J. F., Böttger, M., Bouchet, C., Brazier, J. E., Butt, T., Carapezzi, C., Carlton, J., Carneiro, A., Charil, A., Coimbra, R., Cozzi, M., Crabb, D. P. ORCID: 0000-0001-8611-1155, Cunha-Vaz, J., Dahlke, C., de Sisternes, L., Dunbar, H., Finger, R. P., Fletcher, E., Floyd, H., Francisco, C., Gutfleisch, M., Hogg, R., Holz, F. G., Hoyng, C. B., Kilani, A., Krätzschmar, J., Kühlewein, L., Larsen, M., Leal, S., Lechanteur, Y. T. E., Luhmann, U. F. O., Lüning, A., Marques, I., Martinho, C., Montesano, G. ORCID: 0000-0002-9148-2804, Mulyukov, Z., Paques, M., Parodi, B., Parravano, M., Penas, S., Peters, T., Peto, T., Pfau, M., Poor, S., Priglinger, S., Rowen, D., Rubin, G. S., Sahel, J., Sanches Fernandes, D., Sánchez, C., Sander, O., Saßmannshausen, M., Schmid, M., Schmitz-Valckenberg, S., Schrinner-Fenske, H., Siedlecki, J., Silva, R., Skelly, A., Souied, E., Staurenghi, G., Stöhr, L., Tavares, D., Tavares, J., Taylor, D. J. ORCID: 0000-0001-8261-5225, Terheyden, J. H., Thiele, S., Tufail, A., Varano, M., Vieweg, L., Werner, J., Wintergerst, L., Wolf, A. & Zakaria, N. (2024). Development and Valuation of a Preference-Weighted Measure in Age-Related Macular Degeneration From the Vision Impairment in Low Luminance Questionnaire—A MACUSTAR Report. Value in Health, 27(5), pp. 642-654. doi: 10.1016/j.jval.2024.02.001


Objectives: This study generates VILL-UI (Vision Impairment in Low Luminance - Utility Index), a preference-weighted measure (PWM) derived from the VILL-33 measure for use in patients with age-related macular degeneration (AMD) and valued to generate United Kingdom and German preference weights.

Methods: A PWM consists of a classification system to describe health and utility values for every state described by the classification. The classification was derived using existing data collected as part of the MACUSTAR study, a low-interventional study on AMD, conducted at 20 clinical sites across Europe. Items were selected using psychometric and Rasch analyses, published criteria around PWM suitability, alongside instrument developer views and concept elicitation work that informed VILL-33 development. An online discrete choice experiment (DCE) with duration of the health state was conducted with the United Kingdom and German public. Responses were modeled to generate utility values for all possible health states.

Results: The classification system has 5 items across the 3 domains of VILL-33: reading and accessing information, mobility and safety, and emotional well-being. The DCE samples (United Kingdom: n = 1004, Germany: n = 1008) are broadly representative and demonstrate good understanding of the tasks. The final DCE analyses produce logically consistent and significant coefficients.

Conclusions: This study enables responses to VILL-33 to be directly used to inform economic evaluation in AMD. The elicitation of preferences from both United Kingdom and Germany enables greater application of VILL-UI for economic evaluation throughout Europe. VILL-UI fills a gap in AMD in which generic preference-weighted measures typically lack sensitivity.

Publication Type: Article
Additional Information: Copyright © 2024, International Society for Pharmacoeconomics and Outcomes Research, Inc. Published by Elsevier Inc. This is an open access article under the CC BY license (
Publisher Keywords: MACUSTAR Consortium, Vision Impairment in Low Luminance-33, age-related macular degeneration, preference elicitation, preference-weighted measure, quality-adjusted life-year,
Subjects: R Medicine > RE Ophthalmology
Departments: School of Health & Psychological Sciences
School of Health & Psychological Sciences > Optometry & Visual Sciences
SWORD Depositor:
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