Purpose: To develop a descriptive system for a glaucoma-specific preference-based health-related quality of life (HRQoL) instrument: the Health Utility for Glaucoma (HUG-5).
Methods: The descriptive system was developed in 2 stages: item identification and item selection. A systematic literature review of HRQoL assessment of glaucoma was conducted using a comprehensive search strategy. Purposeful sampling was used to recruit patients with different clinical characteristics. Relevant items were presented to glaucoma patients through face-to-face, semistructured interviews. Framework methodology was applied to analyze interview content. The recurring themes identified through an iterative content analysis represented topics of most importance and relevance to patients. These themes formed the domains of the HUG-5 descriptive system. Three versions of the descriptive system, differing in explanatory detail, were pilot tested using a focus group.
Results: The literature review identified 19 articles which contained 266 items. These items were included for the full-text review and were used to develop an interview guide. From 12 patient interviews, 22 themes were identified and grouped into 5 domains that informed the 5 questions of the descriptive system. The HUG-5 measures visual discomfort, mobility, daily life activities, emotional well-being, and social activities. Each question has 5 response levels that range from "no problem" to "severe problem." The focus group comprised 7 additional patients unanimously preferred the version that contained detailed, specific examples to support each question.
Conclusions: A 5-domain descriptive system of a glaucoma-specific preference-based instrument, the HUG-5, was developed and remains to be evaluated for validity and reliability in the glaucoma patient population.