Journey to Glaucoma Care A Holistic Exploration of Patient Preferences and Perspectives

Abstract

Patient-centred care is care that is respectful of, and responsive to the preferences, needs and values of patients. It is a guiding principle in Australian healthcare and has been shown to increase patient safety, quality, provider and patient satisfaction. Of emerging concern amongst ageing populations worldwide is the growing burden of glaucoma. Glaucoma is a chronic disease of the optic nerve with peak incidence and glaucoma-related blindness in later age. Thus, current service design will need to be accessible and acceptable to patients while efficient service solutions (e.g. collaborative models of care, tele-glaucoma services, mobile glaucoma units) must be evaluated in order to meet growing demands. Economic evaluations of glaucoma services are also useful to inform clinic and funding structuring.To ensure that the glaucoma burden is addressed with a patient-centred approach, we must first understand the perspectives, preferences and values of patients who are receiving glaucoma care. Using a qualitative methodology, we first explored current glaucoma patient perspectives and found that patients lack agency in accessing glaucoma care. They are limited in their knowledge and understanding, therefore relying on primary care clinicians to direct them. Patients desired high quality care but not all patients perceived quality as equivalent to health outcomes instead citing communication from their doctor and continuity of care. Our second study utilised a discrete choice experiment to quantify patient preferences. We demonstrated that patients have definitive preferences regarding their glaucoma service. Preferences were clearly influenced by clinical expertise and the continuity of provider for their care. Patients also desired lower cost and wait times. There were measurable differences in preferences for patients already self-selected to access private providers with preference associated more strongly with expertise and continuity of care when compared to patients accessing public clinics.Ultimately, this thesis elucidates that patients have definitive preferences for glaucoma care but lack agency in accessing care. Healthcare providers must tailor service design to meet patient preferences, ensuring that senior clinicians are involved and continuity of care is maintained. Costs and waiting times should be minimised. To empower patients, primary care providers must be a source of guidance and knowledge. They must advocate for patients in their glaucoma journey and tailor referrals to meet patient preferences, whilst objectively evaluating tertiary service providers. Altogether, this thesis holistically investigates patient-centeredness in glaucoma care, and provides critical direction for design of comprehensive glaucoma services