Retinal diseases such as neovascular age-related macular degeneration and diabetic macular oedema are major causes of irreversible vision loss. Treatment commonly involves repeated intravitreal anti-VEGF injections over many years. These ongoing injections can impose multiple burdens on patients — physical, psychological, social and financial — and are associated with reduced adherence and poorer real-world outcomes. Existing literature is predominantly quantitative and does not capture, from patients' perspectives, why individuals persist with, struggle against or discontinue prolonged treatment.
This qualitative evidence synthesis is intended to fill that gap by identifying and synthesising primary qualitative research on the lived experience of long-term anti-VEGF therapy, with the aim of informing patient-centred nursing care, shared decision-making and injection-service design.
The review will identify, appraise and synthesise qualitative studies to understand:
Eligible studies include primary qualitative studies and independently extractable qualitative components of mixed-methods studies involving adults aged 18 years or over receiving long-term anti-VEGF therapy for retinal disease. No language restriction will be applied; studies will be eligible irrespective of publication language. The Population, Phenomenon of Interest, Context and Study design framework will guide inclusion decisions.
The protocol does not report any restrictions based on specific retinal diagnoses beyond the requirement that participants are receiving long-term anti-VEGF injections.
Initial searches were conducted across nine databases from inception between 31 May and 2 June 2026: PubMed, Embase, CINAHL, PsycINFO, Web of Science, Scopus, CNKI, Wanfang Data and SinoMed. These searches will be updated before completion of the review. In addition to database searching, citation tracking and searches of thesis repositories will be used to identify further relevant studies.
The protocol specifies that searching will include non-English databases (CNKI, Wanfang Data and SinoMed) to capture studies published in other languages.
Two reviewers will independently screen records for eligibility and perform data extraction. Study quality will be appraised using the Joanna Briggs Institute checklist for qualitative research. Any disagreements between reviewers will be resolved by consulting a third reviewer.
Data extraction will focus on qualitative findings relevant to treatment burden and adherence in adults receiving long-term anti-VEGF injections. The protocol indicates that independently extractable qualitative components of mixed-methods studies will be treated as eligible qualitative evidence.
The synthesis will use Thomas and Harden's three-stage thematic synthesis approach to identify and develop themes across included studies. Confidence in each review finding will be assessed using the GRADE-CERQual approach (Grading of Recommendations Assessment, Development and Evaluation–Confidence in the Evidence from Reviews of Qualitative research).
Reporting of the completed synthesis will follow Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidance. The protocol itself was reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P).
The review team will involve patients and family advisers in interpretation and dissemination. Specifically, six to eight patients, with up to two family advisers, will help interpret preliminary themes and contribute to development of a plain-language summary. This involvement aims to ensure findings and recommendations are relevant and accessible to people with lived experience of long-term intravitreal injections.
Ethical approval is not required for this review because it uses published data only. Findings will be disseminated through peer-reviewed publication and conference presentation. The review is registered with PROSPERO under number CRD420261405614.