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E. K. Akpek, V. D. Patel, T. Doan, K. Fitzgerald, A. Dubey; Development of a Quality of Life Questionnaire for Atopic Keratoconjuctivitis. Invest. Ophthalmol. Vis. Sci. 2010;51(13):1928.
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Atopic keratoconjuctivits (AKC) is an uncommon but severe form of allergic eye disease characterized by chronic inflammation of the cornea, conjunctiva, and lower lid. Due to the chronic and symptomatic nature of the disease, it is likely to impact patients’ health related quality of life (HRQoL). The objective of this research was to develop a questionnaire to assess symptoms and HRQoL impact of AKC.
A draft item list was created based on a literature review, as well as input from AKC clinical experts. Four focus groups, and one individual interview were conducted. A total of 21 AKC patients from 3 different countries,(UK, USA, and Spain) were participated in identifying content for the questionnaire. Open-ended input was obtained from the subjects, using a structured discussion guide, to help understand the symptoms and their impact on AKC-specific QoL. Towards the end of the interview, patient input was also obtained on the list of draft items. The draft item list was revised significantly, based on input from focus group patients, to create the AKC Quality of Life Questionnaire (AKCQLQ). Cognitive debriefing interviews were conducted with 8 AKC patients to assess the face and content validity of the AKCQLQ items.
Most commonly reported symptoms were itchy and watery eyes, discharge, redness in and around the eyes, and light sensitivity. Patients reported being limited in activities such as reading, driving, and using a computer. Patients also reported AKC as having significant impact on their social and emotional well-being. Based on focus group feedback, 24 items were included in the questionnaire. These items were grouped in 5 domains: eye symptoms, skin symptoms, activity limitation, vitality and emotional function. Cognitive debriefing established face and content validity of AKCQLQ and supported the deletion of 3 items.
Using focus groups, we were able to identify content areas and aspects of symptom related quality of life to design a novel AKCQLQ. Further research is required to establish the reliability and validity of the AKCQLQ questionnaire.
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