Abstract
Patients with exudative and nonexudative age-related macular degeneration (AMD) can experience physical, mental, social, administrative or financial burden that are associated with the treatment of this progressive chronic disease. The role of healthcare providers in supporting patients who experience high treatment burden can be important, especially when it comes to effective communication. Despite previous research underlining the need to improve patient-provider communication in AMD care, patient experiences with communication, and how these are related to perceived treatment burden, remain underexplored. A survey was distributed among Dutch patients with AMD, which contained questions on several aspects of communication with the patient's ophthalmologist, such as the Quality Of communication Through the patients' Eyes (QUOTE-COMM, including task-, affect- and therapy-oriented communication) questionnaire. Patients were primarily enlisted through a patient association. A total of 162 patients completed the questionnaire, of which 133 provided fully completed responses. While patients reported positive experiences with affect-oriented communication of their ophthalmologist, they rated task- and therapy-oriented communication as below their expectations. Most patients wished to receive (additional) information on AMD-related costs (71%), future perspectives (71%) and coping with negative emotions pertaining to the disease (68%). Both lower experience scores on task- and affect-oriented communication and lower self-efficacy were associated with higher administrative burden and mental burden among patients. Our study shows that current communication, information provision and decision-making do not fully meet patients' needs and preferences. Enhancing patient-provider communication seems important, as effective dialogue is likely to diminish patients' perceived treatment burden.
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