Impact of corneal disease from patients' and ophthalmologists' perspectives.

Abstract

Most studies on the effects of corneal transplantation have mainly focused on clinical outcomes. Studies which have taken patients’ perspectives into account seem limited in number and have used different concepts to measure patient-reported outcomes (Claesson et al. 2017; Fasolo et al. 2012; Uiters et al. 2001). Both clinical and patient-reported outcomes are important for clinical decision-making and research purposes, however, which domains are most relevant to patients does not seem to be straightforward. The aim of this qualitative study was to assess these relevant domains from the perspectives of patients and ophthalmologists using the categories of the International Classification of Functioning, Disability and Health (WHO 2001). Self-reported data of patients, both without (N = 19) and with (N = 29) corneal transplantation, and ophthalmologists (N = 7) who visited the national day for corneal patients organized by the Dutch Corneal Patient Association (CPA) in 2015 were qualitatively analysed in this study. Patients and ophthalmologists were asked to fill out a form and were invited to think broadly about themes or activities of which they thought influenced the (daily) lives of corneal patients. All meaningful concepts were linked to the ICF categories by two assessors using standardized procedures to structure health information (Cieza et al. 2016). The qualitative nature of the study allowed only descriptive outcomes. Mean age of patients was 60.8 years (SD 30.9) and 50% was female. The study has been performed in accordance with the ethical standards of the Declaration of Helsinki. Table 1 shows the categorization of the 295 meaningful concepts that could be discerned; 105 from corneal disease patients, 128 from corneal transplantation patients and 62 from ophthalmologists. The results show that corneal disease patients, corneal transplantation patients and ophthalmologists mainly reported concepts related to the ICF-chapter Activities and Participation, such as doing sports which could be linked to the Activity and Participation life domain Community, social and civic life. Patients also often mentioned driving a car which was linked to the life domain Mobility, and reading to the life domain Learning and applying knowledge. Ophthalmologists slightly more often mentioned work and employment which was linked to the life domain Major life areas and carrying out a daily routine to the life domain General tasks and demands. They also reported concepts related to the ICF-chapter Body Functions, such as the so-called seeing functions and energy level. The ICF-chapter Environmental Factors included use of contact lenses and glasses mainly for protection. For patients, the ICF-chapter Personal Factors could be linked to concepts regarding coping with the corneal disease, that is acceptance of the condition. For the ICF-chapters Body Functions and Environmental Factors, and for the Activity and Participation life domains Community, social and civic life, Mobility, and Learning and applying knowledge, patients mentioned a broader range of aspects than ophthalmologists. However, for the life domains Major life areas and General tasks and demands, ophthalmologists mentioned slightly more concepts (Table 1). The present qualitative study provides insight into the impact of corneal disease on the daily life of corneal patients, as perceived by patients and ophthalmologists. They reported similar or complementary meaningful concepts, however, patients often disclosed more detail in their statements. Although there might be some selection bias, ophthalmologists seem to be aware of the impact a corneal disease has on several life domains. If patient-reported outcomes are taken into account to investigate the effects of interventions on corneal diseases, outcome measures related to the broad range of meaningful concepts mentioned in this qualitative study should be included. Those concepts could also be used in clinical decision-making and in evaluating cornea treatment outcomes in clinical practice.