1 Department of Community & Clinical Allied Health, La Trobe University, Melbourne, Australia
2 Department of Ophthalmology, Royal Children’s Hospital, Melbourne, Australia
3 Department of Rehabilitation, Nutrition & Sport, La Trobe University, Melbourne, Australia
4 Centre for Eye Research, Royal Victorian Eye and Ear Hospital, East Melbourne, Australia
5 Department of Surgery, Ophthalmology, University of Melbourne, Melbourne, Australia
Anti-vascular endothelial growth factor (VEGF) treatment for neovascular age-related macular degeneration (AMD) is chronic and invasive. Patient education can play a key role in reducing treatment burden. The experiences of patients undergoing anti-VEGF injections for AMD with respect to patient education have not been widely investigated, with just a few small, single-centre investigations having been undertaken. Furthermore, no study has explored issues affecting patient referral to low vision services and patient support groups in this clinical population, from the perspective of ophthalmologists and orthoptists. This study aimed to: i) investigate the experiences of AMD patients undergoing anti-VEGF treatment in relation to patient education, and ii) identify issues surrounding patient referral to support services according to ophthalmologists and orthoptists.
Forty patients (16 males, 24 females) with neovascular AMD undergoing anti-VEGF treatment were recruited from a private ophthalmology practice and public hospital in Melbourne, Australia. Patients participated in semistructured interviews regarding the information and patient education they received about their eye condition and its management. Interviews were audio recorded and thematic analysis performed. In addition, eighteen orthoptists and one ophthalmologist, recruited from the same locations, completed a self-administered questionnaire exploring the provision of patient education and referral of patients to support groups and low vision services.
Patient satisfaction with the quantity of educational information received was low, especially in public patients. Many patients reported receiving inadequate information about AMD and its treatment. Patient awareness and uptake of low vision services and support groups was poor. Factors influencing uptake (as per patients) included: timing of referral, financial outlay, perceived benefits and accessibility. Barriers to patient referral (as per orthoptists) included: practical and knowledge-based factors, patient factors and clinical protocols.
Many patients felt uninformed about their treatment and also reported limited knowledge of available support services. Improving the provision of patient education and more consistent referral to support services may lessen treatment-related anxiety and assist patients to better manage the challenges of AMD treatment.