Lost to follow-up while undergoing intravitreal injection therapy: barriers to adherence in a real-world setting

BACKGROUND: Intravitreal anti‑VEGF therapy is effective, yet real‑world outcomes are limited by non persistence. We investigated patient‑reported reasons for discontinuation under pro-re-nata therapy protocol. METHODS: This ambispective real-world study at a German eye hospital evaluated patients receiving intravitreal therapy for diabetic macular edema (DME), retinal vein occlusion (RVO), or neovascular age related macular degeneration (nAMD) using the pro re nata (PRN) protocol. Patient records were reviewed, and those meeting lost to follow up (LTFU) criteria (no injections or visits within 3 months) were contacted via written letter and phone. When patients were reached surveys to assess reasons for LTFU, perceived treatment burden, mobility, and comorbidities were completed. RESULTS: Of 657 cases, 347 (52.8%) met the LTFU- criteria, 25 of which were medically indicated. Despite multiple attempts, contact and data collection was successful for only 39 patients (response rate: 12%), major part was unwilling or unable to participate. The most common reasons for discontinuation were subjective lack of treatment need (56%), perception of being “fully treated” (33%), fear of injections (26%), travel difficulties (28%), and time burden (15%). Despite these barriers, 52% of patients reported that the treatment was “not burdensome at all,” while 3 patients (8%) continued therapy elsewhere. CONCLUSIONS: In this exploratory, single-centre cohort, a significant portion of patients had effectively disengaged from IVI care and were unreceptive to delayed outreach. Outcome-related perceptions and organizational hurdles were key, actionable barriers. Future strategies to improve adherence should focus on proactive follow-ups shortly after therapy discontinuation.