PURPOSE: Patient-reported outcome measures (PROMs) are accepted widely as important outcomes in comparative effectiveness research. Over 30 PROMs have been described for use in glaucoma research, but their role in routine care is undefined. Our study explores the views of patients with glaucoma and their carers on the feasibility and content of a glaucoma PROM for use in day-to-day clinical practice. METHODS: Focus groups were held with 71 participants facilitated by 23 staff working in the field of ophthalmology. Comparisons were made among themes derived from this exercise using simple thematic analysis and currently available health-related quality of life (HRQoL) instruments. RESULTS: Participants were supportive of reporting their outcomes if the instrument was short, practical, and useful. Potential barriers to the use of PROMs, including bureaucratic overload and accessibility issues, were identified. Measuring health outcome and patient experience was important to participants. No freely available instrument covers all the domains identified, particularly knowledge and understanding. A novel instrument, a glaucoma patient-reported outcome and experience measure (POEM) is proposed. This addresses three aspects of outcome (fear of blindness, acceptability of treatment/side effects, and impact on daily life), and three aspects of experience (safety, respect, and understanding). CONCLUSIONS: Using PROMs routinely in the management of glaucoma presents significant challenges. Although current instruments (questionnaires) cover many of the participants' key domains, no single instrument covered them all. Further research is required to determine the feasibility (resources required), and validity and reliability of the proposed glaucoma POEM in clinical care.
|Number of pages||8|
|Journal||Investigative Ophtalmology & Visual Science Journal|
|Publication status||Published - 31 Aug 2012|