Investigation of time to first presentation and extrahospital factors in the treatment of neovascular age-related macular degeneration: a retrospective cross-sectional study

Abstract

ObjectivesTo assess the time from symptom onset to treatment for neovascular age-related macular degeneration (nvAMD) and to measure the awareness of AMD in Southeast Scotland.DesignRetrospective cross-sectional study.SettingSecondary care, Southeast of Scotland.MethodsPatients treated with intravitreal therapy (IVT) for nvAMD in Southeast Scotland between 2013 and 2015 were identified using a treatment register. Notes were retrospectively reviewed. We measured time from: (A) symptom onset to first presentation at primary care, (B) referral to ophthalmic clinic appointment and (C) ophthalmic clinic appointment to first IVT treatment. To investigate AMD awareness, we performed a cluster random sample survey of patients visiting non-AMD ophthalmic clinics using a previously validated 12-item questionnaire.Results195 patients (mean age 78 years) were included in the study. The mean delays between the different stages—A, B and C—were 54.2 (95% CI ±13), 28.2 (95% CI ±4.0) and 31.5 (95% CI ±3.6) days, respectively. There was an additional mean delay of 7.5 (95% CI ±1.6) days when patients were indirectly referred by optometrists via general practitioners (P<0.05). 140 patients (mean age 78) participated in the awareness survey; 62.1% reported being ‘aware’ of AMD but only 37.3% described AMD symptoms correctly.ConclusionsThere was a significant delay at every step of the nvAMD care pathway. The causes for this were multifactorial and included delays in first presentation to a healthcare provider, referral from primary care and initiation of secondary care treatment. Our data are likely to underestimate prehospital delays as a large number of cases are likely to have undefined symptoms and onset. We also identified suboptimal awareness of AMD which could account for a substantial delay in presentation from symptom onset. These findings highlight the need to address AMD awareness and the need for urgent treatment to prevent avoidable vision loss resulting from nvAMD.

Moorfields AMD database report 2: fellow eye involvement with neovascular age-related macular degeneration

“…This is supported by the existing lack of awareness of AMD and evidence of substantial delay from symptoms to treatment in the UK AMD care pathways. [31] Interestingly, in this cohort of patients, vision loss secondary to macular scarring in the first eye does not appear to result in increased vigilance that could lead to early detection of fellow eye involvement. One might argue that scarring in the first eye implies more aggressive disease causing worse VA at presentation of fellow eyes, but the similar VA gain over time to first eyes in our cohort does not support this theory.…”

Systematic review: non-adherence and non-persistence in intravitreal treatment

“…Some patients might be particularly prone to missing appointments, therapy breaks, and suspension of retreatment despite activity [13][14][15][16][17]. The danger of a delay is not only present at the beginning of the treatment [18] but also during the follow-up, e.g., due to logistical factors such as summer vacations [19].…”

The Moorfields AMD Database Report 2 - Fellow Eye Involvement with Neovascular Age-related Macular Degeneration

“…This is supported by the existing lack of awareness of AMD and evidence of substantial delay from symptoms to treatment in the UK AMD care pathways. [29] Interestingly, in this cohort of patients, vision loss secondary to macular scarring in the first eye does not appear to result in increased vigilance that could lead to early detection of fellow eye involvement. One might argue that scarring in the first eye implies more aggressive disease causing worse VA at presentation of fellow eyes, but the similar VA gain over time to first eyes in our cohort does not support this theory.…”