Discussion
This study found that only a third of patients were able to self-detect AMD signs/symptoms while the majority were detected by an optometrist. This finding supported the RCOphth guidelines, which suggested that AMD symptoms are often subtle and difficult to self-detect.1 Common symptoms experienced particularly among those with wet AMD were distorted vision, deterioration/loss of vision including blurred vision and central field defects/scotomas, in line with previous findings.16 Interestingly, however, we noted overlap in symptoms reported by those with wet and dry AMD and that it was often only when symptoms interfered with patients’ activities that they sought help. Most respondents who self-detected symptoms first sought help from their optometrist (56%). The majority of respondents (64%) sought help within the recommended time frame of 1 week.1 Women and those diagnosed with wet AMD were more likely to seek help within the recommended time frame. However, there was a delay in diagnosis for 36% of patients, including 27% with wet AMD with consequent risk of sight loss. For those reporting their first appointment with an HCP was delayed for more than 2 days after first noticing symptoms, reasons for delay reflected individual/service-related issues, most commonly difficulties obtaining appointments, AMD not being detected in the initial consultation and, particularly for those with wet AMD, respondents not attributing their symptoms to AMD.
This is the first large-scale nationwide study to examine the help seeking behaviours of patients with wet and/or dry AMD, including questions about how AMD was first detected, initial symptoms, the time taken to seek help and reasons for any delay. Furthermore this study is one of the first to obtain qualitative data on the symptoms and reasons for delay patients report. The response rate of 39% was low, but not dissimilar to other recent surveys including a Macular Society survey in 2014 (response rate=31%).17Analysis was conducted with single variables; therefore, there is the possibility of confounding by variables which may have been related to each other or unmeasured such as VA, which, although beyond the scope of this paper, are important to acknowledge, and may benefit from future research. The sample was self-selecting and may, therefore, have included those whose experiences differed from the wider population of people with AMD. As reported elsewhere, 76% of the total sample responding to the 2013 Macular Society survey were satisfied with the diagnostic consultation.11 It may be that those who were dissatisfied with the diagnostic consultation experienced more delays in diagnosis and/or treatment and were less likely to complete the survey. In addition Macular Society members may be a more proactive group than the population as a whole and perhaps likely to seek help and obtain support earlier. These possible sources of bias may influence the external validity of the findings. Nevertheless, there was still delay in help-seeking for initial symptoms, which several respondents attributed to a lack of knowledge of AMD prior to diagnosis. Therefore, the results are likely to generalise to a wider population and, if anything, may underestimate the true scale of the problem.
Our finding that those with wet AMD were twice as likely as those with dry AMD to seek help within 1 week provides a more positive picture than previous studies. Earlier research by Varano and colleagues reported that for those with wet AMD, only 23% sought help within 1 week of first noticing a change in vision.18 This compares with 72% of respondents with wet AMD in the present study. However, Varano et al’s18 study was conducted across nine countries, where time to seek help may differ between countries due to variation in access to, and provision of, eye-care services, particularly as this study indicated delays in obtaining an appointment was a primary reason for delay. In addition, Sim et al10 suggested that a lack of awareness of AMD could account for substantial delays. It may be that the smaller percentage of respondents delaying help seeking in this study is attributable to greater awareness of AMD. Although respondents in this study were recruited from the Macular Society, 57% reported no prior awareness of AMD (table 1), and further quantitative analyses indicated no significant link between prior awareness of AMD and time to seek help. We noted, however, that qualitatively several respondents reported lack of awareness of AMD symptoms and risk factors as a reason for delayed help seeking (table 3).
Sim et al’s10 additional finding that only 37.3% of patients could describe AMD symptoms correctly was also echoed in this study as several patients listed symptoms not indicative of AMD, reported a lack of knowledge about AMD symptoms/risk factors or misattributed symptoms of AMD to other eye conditions (eg. cataract or glaucoma). This highlights the need for public and patient education about symptoms of AMD and how to distinguish these from symptoms of other eye conditions, particularly in an elderly population, likely to have more than one eye condition.
The most commonly cited reason for delay, primarily by those with wet AMD, of difficulty obtaining an earlier hospital, optometrist or GP appointment, is consistent with previous research that among people with eye conditions, including AMD (23%), a large proportion (72%) experienced permanent reduction in VA due to service-related delays.19 Of these service-related delays, 76% were due to delayed follow-up appointments for monitoring, a problem reported primarily by patients with wet AMD in this study. Shared care between community optometrists and hospital ophthalmologists has been suggested as a possible solution to such delays, with optometrists monitoring more stable cases of wet AMD and freeing up ophthalmologists to diagnose and treat new cases of wet AMD more promptly.20 Several patients in the current study, particularly with wet AMD, reported that they were passed between HCPs or referred from their optometrist to the hospital via their GP. This is despite RCOphth guidance since 200915 that optometrists should refer straight to the hospital and suggests that this message needs to be highlighted again to reduce delay, particularly as referral via the GP has been found to extend delay by an average of 7.5 days.10 The RCOphth guidelines further suggest that patients should be given a clear diagnosis and suggestions for treatment, including signposting to support services where medical treatment is not possible. However, in this study, 31% of patients reported that a diagnosis of AMD was not labelled in the initial consultation (by a hospital eye specialist in 20% of cases, 23% by a GP and 57% by an optometrist), and 8% reported that they were told ‘nothing can be done’, with 42% of these patients having wet AMD. This is in line with previous research, which suggested only 43% of patients were diagnosed during their first visit.18 Delay in diagnosis has already been shown to be associated with likelihood of registration as sight impaired or severely sight impaired and to cause delay in accessing support services.11 Clearly interventions are needed to improve the skills of practitioners in detecting and managing AMD symptoms and awareness of the urgency for treatment of wet AMD. For several patients AMD was only detected following cataract removal. Although there is consensus that cataract surgery does not cause AMD progression, the presence of co-existing cataract may mask AMD detection.21 22 The current study, therefore, highlights the importance of evaluating patients for AMD symptoms before and following cataract surgery.
Patient-related reasons for delayed assessment included patients, commonly with wet AMD, not attributing their symptoms to AMD due to lack of knowledge about the symptoms and risks for the condition, or that they did not perceive their symptoms to be urgent or serious, and therefore waited for their next ‘routine’ appointment. This highlights the need for a public health campaign educating the general population about the symptoms and risk factors for developing AMD and the importance of prompt help seeking with an urgent self-referral to eye emergency care services if symptoms are noticed.
In summary, although most patients sought help within 1 week, there was a delay from symptom onset to assessment for 27% and 50% of patients with wet and dry AMD, respectively. These are in addition to the number of patients whose care was delayed following their initial presentation to a HCP who did not refer appropriately to the Macular Clinic. For those with wet AMD this delay has been linked with poorer treatment outcomes, while with dry AMD the diagnostic consultation is a key time for providing education about how to monitor their symptoms for possible change to wet AMD, aiding prompt future help-seeking and reducing likelihood of being registered as sight impaired.11 A number of suggestions have been provided above for reducing delay, primarily in reference to:
Interventions for example, TV/poster campaigns to increase general population and practitioner awareness of AMD symptoms including how to detect AMD and the importance of early help seeking (without first visiting the GP).
Education for newly diagnosed patients in Amsler grid use and ongoing monitoring for wet AMD by patient and practitioner, particularly following treatment for other eye conditions.
Signposting patients with dry/wet AMD to appropriate support services following the initial consultation. For example, charities can provide additional information to reinforce HCP advice about ongoing monitoring for potential signs of wet AMD and visual rehabilitation/counselling services to support adjustment to acquired visual difficulties; such support services could also help patients with dry AMD understand why they have not been referred for medical treatment. Signposting to support services is recommended in the NICE guidelines for those with wet AMD currently12 but our findings suggest this is also beneficial for those with dry AMD.
Informative interventions targeting the general population will need pilot work to ensure optimal design but have the potential for saving the eyesight of a substantial proportion of people with wet AMD currently not receiving sufficiently prompt diagnosis and treatment, and even more people who will go on to develop treatable wet AMD.