Reasons for late diagnosis of neovascular age‐related macular degeneration: a mixed‐methods study

Dear Editor, In patients with neovascular age-related macular degeneration (nAMD), a high visual acuity (VA) at treatment onset increases the chance of maintaining good VA; however, a majority of patients has the condition for months prior to diagnosis (Ho et al. 2017). To increase the success of future interventions, it is imperative to know which delaying factors patients experience in their time to diagnosis (TTD) and possible ways to minimize these. We conducted a study investigating patients’ perspective of their health-seeking behaviour in relation to delay of TTD. This mixed-methods study was conducted using semi-structured interviews with patients having newly diagnosed nAMD. Interviews were audio recorded, transcribed and analysed using the framework method with an inductive coding approach (Gale et al. 2013). Twenty-five patients were included (mean age 77 years, 84% female). Median interview length was 10.5 min. Estimations of TTD from beginning of symptoms to diagnosis were made (Fig. 1A). Potential reasons for delay were coded into three overarching themes: factors related to patients, primary health care (PHC) and secondary health care (SHC) (Fig. 1B). Important delaying factors included patients’ lack of knowledge causing a late response at symptom onset, late assignment of an appointment at the ophthalmologist (PHC) and waiting periods from referral at the ophthalmologist to the initial visit at the hospital (SHC). Improvements suggested by patients to shorten TTD comprised increased public information, regular check-ups and shorter waiting periods. Exploring the individual self-reported timelines, the major cause of delay was related to patient response (Fig. 1A). However, several patients experienced a waiting period of 1 month from referral at the ophthalmologist to the initial visit at the hospital. A likely interaction between patient- and system-related factors was found (Fig. 1B), that is, perception of long waiting periods potentially affecting patient behaviour. Low health literacy such as missing knowledge and a delayed response to symptoms appeared to be a major risk factor for delay. The optician was reported as being the greatest facilitator in reducing TTD, while the ophthalmologist was the most important factor of delay due to the waiting periods. Supposedly, preceding lack of patient knowledge might have been a contributing factor which made patients accept this wait; however, patients with symptoms of nAMD should be examined much quicker. In the secondary healthcare system, only a few patients experienced waiting periods longer than the set objective for waiting periods (objective: 1-4 weeks), while many experienced waiting periods ≤ 2 weeks. Considering delaying factors as well as improvements mentioned by patients to shorten TTD, a strong recommendation would be to improve patients' knowledge of AMD by increased public information. Furthermore, support services provided by the municipality were mentioned as a facilitator and improving these could be considered. Both suggestions have also been recommended in other studies (Sim et al. 2017; Parfitt et al. 2019). Lastly, a screening programme could be explored. However, one study investigating screening programmes at the ophthalmologist, did not find it to be cost-effective (Tamura et al. 2015). More cost-effective approaches, such as questionnaires or digital self-screening programmes, could be tested. In conclusion, a delay of diagnosis in neovascular age-related macular degeneration (nAMD) reduces the likeliness of a high visual acuity after treatment. While patient- and system-related factors both appear to affect the delay of diagnosis, the most significant factor seems to be patient delay. Increasing public knowledge and reducing healthcare-associated delays may aid in a fast diagnosis and potentially improve prognosis of patients with nAMD.