Health, hope and worry: A qualitative study of people with diabetes' experiences with anti‐ VEGF treatment

AIMS: Diabetic macular edema (DME) is a leading cause of vision loss among individuals with diabetes. While anti-VEGF therapy is a widely used and effective treatment, limited research has explored participants' lived experiences throughout the treatment process. METHODS: This qualitative study summarizes findings from longitudinal interviews conducted at 4 and 12 months after initiating intravitreal anti-VEGF therapy. The analysis focused on participants' emotional, physical and psychosocial responses to treatment. RESULTS: An overarching theme, 'health, hope, and worry', captured the ambivalent experiences of participants. Two main categories were identified: 'hope and anxiety during injection treatment' and 'uncertainty and variation in visual outcomes'. Participants described a spectrum of physical discomfort and emotional reactions, influenced by expectations, bodily sensitivity and clinical context. Trust in healthcare providers, consistent care and adequate information were crucial for emotional resilience. Perceived treatment effectiveness varied, with some experiencing significant visual improvement and regained independence, while others reported little or no change, leading to frustration and anxiety about future vision. CONCLUSIONS: Anti-VEGF treatment for DME is experienced not only as a clinical intervention but as an emotionally and physically complex journey. Participants' navigate fluctuating levels of hope and worry, shaped by their bodily experiences, emotional responses and expectations of outcomes. These findings highlight the need for empathetic communication, consistent care and individualized support to promote adherence and mitigate emotional distress. The insights from this study are especially relevant for multidisciplinary diabetes care teams.