The initial planned survey runtime was 4 months (16 weeks). However, due to reaching the target patient number in a slightly shorter time span, the survey was conducted for a period of 14.5 weeks from 4 May until 12 August 2020.

Overall, the advertisement for the survey generated 375,115 visits on the landing page (page with first information about the survey, directed after clicking the advertisement). A total of 318,361 visitors did not start the survey and 34,906 surveys had been started but were not completed. In total, 21,848 persons completed the survey out of which 20,967 were older than 18 years and stated to live in Germany. Minors and people not living in Germany were excluded by ending the survey after this information was collected. Out of these, 5035 persons stated that they were having a diagnosis of nAMD; those were defined as “6” and final analyses were based on this population. Out of the True Completers, the optional QoL SF12v2 was fully answered by 4276 nAMD patients, building the subgroup defined as “QoL SF12 Completers” (see Fig. 1).

Flowchart of survey participants

Analyzing the number of visits on the landing page of the survey via Google Analytics turned out that 60% of the users were accessing the survey via mobile device, 28% via desktop, and 12% via tablet.

Regarding advertisement, the most successful advertisement was Google Display Network, generating 94.1% of all completed surveys. Facebook advertisement generated 3.6% of the completers and Google search engine marketing 2.3%.

A total of 2244 (45%) females and 2781 (55%) males with a diagnosis of nAMD participated in this survey (10 participants stated their gender as “other”). Mean age of all survey participants was 73 ± 10 years, in males 74 ± 9 years and in females 72 ± 11 years. Most participants were in the age groups 76 to 85 years (37%) and 66 to 75 years (35%). There were 14% in the group 56 to 65 years, 5% were younger than 56 years, and 9% were older than 85 years. The distribution pattern among the different age groups almost corresponded to the overall population for both men and women. However, from the age group < 56 years, the proportion of females (57%) decreased with increasing age to 38% females in the group 76–85 years, whereas the group of > 85 years contained a nearly equal proportion of females (49%) and males (50%). For details related to age distribution, see Fig. 2.

Age distribution of True Completers

A total of 3880 patients (77%) were in a statutory insurance while 1101 patients (23%) had a private insurance (out of those 66.4% had a self-paid private insurance and in 33.6% this insurance was employer-paid). The proportion of males and females with a statutory or a private insurance was similar. Noticeably, the proportion of patients with self-paid private health insurance was particularly high in the age groups 66–75 years (38%) and 76–85 years (40%) compared to the age groups < 56 years (2%) and > 85 years (8%), respectively.

The understanding of nAMD from the patient’s point of view is shown in Table 1.

There were no relevant differences regarding the patient’s self-assessed understanding of nAMD related to age and gender. The self-reported understanding of the disease is slightly better in patients having a private health insurance compared to a statutory insurance (49% vs 40% [good or very good understanding]) and better in patients being currently treated with injections compared to currently not receiving injections (50% vs 34%).

In total, 56% of the patients currently received injections into at least one eye. Two-thirds (68%) of all patients were aware of the requirement for regular ophthalmologic examinations and medical treatment, whenever it is necessary. More than half of the patients (60%) knew that the deterioration of their visual performance can be delayed by drug therapy and around half of the study population (54%) knew that there is no cure for nAMD.

The questionnaire asked patients to state risk factors for nAMD from preset response options (multiple choices allowed). Most participants (89%) considered age to be a risk factor for nAMD, followed by hereditary (33%), and smoking (33%). However, some of the risk factors given by the patients were not described and confirmed as strong risk factors in the literature (23, 24), e.g., arterial hypertension (45%), bad nutrition (21%), weight (18%), daylight (13%), and gender (9%). For details, please refer to Fig. 3.

Summary of risk factors for nAMD as stated by the patients (multiple choices allowed); the risk factors confirmed in the literature are marked with an asterisk

Most patients were informed about their disease by their doctor (93%), followed by internet search (29%), flyers (14%), and their opticians (13%). Results on sources of information are displayed in Fig. 4. The distribution according to age groups revealed that younger patients used the internet more frequently than older patients (40% of patients < 56 to 65 years vs 24% of patients in the age group 76–85 years and 20% of patients older than 85 years). There were only slight differences related to gender. More than two-thirds of patients (69%) knew whether or not their diagnosing ophthalmologist was providing the injections. Knowledge about this option increased with age (from 58% in the group < 56 years to 73% in the group > 85 years) and time since diagnosis (from 64% in the group 0–2 months to 71% in the group > 5 years). This could be due to the fact that more older patients received intravitreal injections compared to younger patients (55% in the > 85 years of age group, 61% in the age group 76–85 years, while only 38% of patients < 56 years received injections).

Sources of disease-related information (multiple choices allowed)

About half of the patients (54%) stated that they had last seen an ophthalmologist within 1 month (mean time since the last visit 6.2 months). While there were no differences concerning the genders in this regard, results suggest a relationship between patients’ age and time since the last visit to an ophthalmologist. In the younger patients’ groups, less patients reported their last ophthalmologist visit within 1 month than in older patients’ groups (in the < 56 years age group 37% and in the 56–65 years age group 44%). A total of 8% of patients noted that their last visit to their ophthalmologist was more than 1 year ago. There were no remarkable differences considering the insurance status (private insurance vs statutory insurance, e.g., last visit less than one month ago was 4% for both; more than 1 year ago was 8% and 9%, respectively).

The majority of patients was able to remember the performed diagnostic methods; however, a relatively large proportion of patients (20%) reported being not sure whether or not optical coherence tomography (OCT) was performed. There were no differences in reported performed diagnostic methods between genders and only small differences concerning the type of health insurance or age groups. However, with increasing age, a slightly increasing proportion of patients reported no fluorescence angiography was performed (33% in the group < 56 years, 44% in the group > 85 years). Diagnostics performed in nAMD as reported by patients are summarized in Table 2.

Most of the patients reported a short timespan between occurrence of symptoms and nAMD diagnosis (1–2 months (30%) and 3–6 months (28%)). Although only 3% of patients recorded a time span of 13–21 months, a relatively large number of patients noted that the time span was > 21 months (18%), resulting in a mean time span of 12.8 months ± 20.5 months. Proportions were similar in males and females and between patients with statutory or private insurance. However, when comparing the age groups, it could be seen that younger patients were more likely to be diagnosed early with the disease, compared to older patients. While 41% of patients < 56 years were diagnosed within a time span of 1–2 months between first symptoms and diagnosis, this was true for 27% of patients aged 76–85 years, and for 23% of patients > 85 years, respectively, resulting in a mean time span in the two youngest age groups (< 65 years) of 11 months ± 19.5 months.

The time since diagnosis (until survey participation) ranged from 0–2 months (8%) to more than 6 years (14%). There were only small differences in time since diagnosis when comparing age groups and genders.

Questioned about their symptoms, most patients reported decreased central visual acuity (70%), followed by distorted vision (63%), and increased glare sensitivity (58%, multiple choices allowed). There were no significant differences between genders and between age groups.

A total of 80% of all patients stated that they test their current visual performance on a regular basis at home. Most of these patients were in the age group 66–75 years (83%); patients belonging to the age groups < 56 years or > 85 years reported to carry out the test at home less often (72% and 73%, respectively). More than one-fourth of the study population did not use any aids to check their vision at home (27% in total). Looking at aids to test their visual performance, the majority of patients (81%) stated to use the “Amsler grid”; only a small portion of the patients used vision tests from the internet or via smartphone apps (10% and 8%, respectively). There was a small difference detected; younger patients (age group < 56 years) stated to use vision tests via internet or smart phone app more frequently (18% and 23%, respectively) than older patients (> 85 years with 12% and 12%, respectively).

The mode of transportation to the treating ophthalmologist by age group is displayed in Table 3.

Most patients indicated that they were driven to their ophthalmologist by an accompanying person (55%), followed by public transportation (22%). The proportion of patients driven by taxi is quite small (7%) but slightly increasing with age with a simultaneous decline in public transportation. Approximately the same number of patients reported less than 30 min and less than 1 h travel time to their ophthalmologist (44% and 40%, respectively); however, 4% of all patients needed more than 2 h to get to their doctor. An accompanying person to get to the ophthalmologist was needed by 46% of patients in total. Between genders, a difference could be detected; more female patients (52%) stated that they needed accompaniment than male patients (42%). As it was expected, accompaniment was mostly needed by the eldest patients (> 85 years, 59%) but interestingly also by the youngest patients (< 56 years, 52%).

Most patients were accompanied by close family members such as their wife (40%), husband (28%), and children (24%). Most accompanying persons were female (59%), while only 38% were male. In 23%, the gender was not specified.

Most patients spent 2 h (35%), 1 h (27%), or even less than 1 h (19%) at their ophthalmologist (including waiting time) but there were still patients who were spending 4 or 5 h in their ophthalmologist office (4% and 1%, respectively). There were no differences related to the type of health insurance. Also, regarding age groups, differences in time spent were not concise (26% of younger patients spent less than 1 h at their doctor compared to 17 to 20% in all other age groups).

Fourteen percent of all patients stated that sometimes they needed to cancel an appointment at the ophthalmologist; most often (in 24%) this occurred in younger patients (< 56 years) and in the eldest patients (> 85 years). Reasons for cancellation of an appointment were mostly health-related (60%), followed by vacation (11%). However, a large proportion (32%) of patients did not specify the cause of the cancellation. Health-related cancellations occurred more frequently in females (71%) compared to males (50%) and in younger patients (< 56 years, 71%) compared to the age groups 66–75 years (60%) and 76–85 years (55%). In most of the cases, an alternate appointment within 1 week or 2 weeks was offered to the patients (46% or 36% respectively); only 10% of patients needed to wait more than 3 weeks. There were no relevant differences in relation to gender, age, or type of health insurance.

Patients were questioned about which control and treatment schedule they would prefer: most patients (51%) stated they would prefer treatment as needed (the date for the next injection will be fixed after the results of the control are available, also called treat and extend, T&E) in contrast to 16% of patients that would like a regular appointment every 4 weeks (control every 4 weeks and injection on an “as needed” basis, also called pro re nata, PRN) or a fixed treatment scheme with control and treatment every 4 weeks favored by 15% of patients. More patients in the older age groups (66–75 years with 52%, 76–85 years with 50%, > 85 years with 54%) preferred the treatment as needed compared to the patients of the youngest age group (< 56 years, 43%). Furthermore, the preference of a fixed appointment every 4 weeks decreased slightly with increasing time spent at the ophthalmologist (from 27% in the group < 1 h to 12% in the group of 4 h).

The majority of patients (79%) expressed their wish to receive more information about therapeutic options and the disease in general, less patients about natural disease progression (51%). Around one-fourth of the patients (27%) stated that they feel comfortable with the provided information (multiple entries stating “yes” were possible for this question, but “no” was an exclusive option. Therefore, the presented percentages refer only to “yes” answers). There was no difference regarding genders and age groups. Most patients stated that it is “very important” (46%) or of “utmost importance” (37%) that control visits are close to their home. Only few patients stated that this is “a little important” or “not so important” (10% and 6% respectively). This was expressed by males and females as well as throughout all age groups.

To take part in clinical studies could be an option for 28% of all patients; 41% stated that this is not an option at all, and 31% of patients said they would possibly take part in a clinical study. The willingness to take part in a clinical study seemed to decrease with age (35% of patients < 56 years stated studies as no option vs 54% of patients > 85 years).

Approximately half (54%) of all participants assessed their general health status as “good,” 26% of the patients stated that it was “impaired,” 15% of patients assessed it as “very good” or “excellent,” and only 5% reported a “poor” general health status. This assessment was very similar in both genders but differed within age groups: The proportion of patients stating their general health status as “very good” or “excellent” decreased with increasing age (< 56 years with 23% vs > 85 years with 10%).

However, 31% of the youngest patients (< 56 years) and 47% of these oldest patients (< 85 years) stated that their general health status was “impaired” or “poor,” whereas smaller proportions in the age groups in between reported these general health statuses.

To complete the characteristics of patients participating in this survey, a second questionnaire (SF-12) dealing with quality of life (QoL) could be completed voluntarily. The SF12® is a registered trademark of Medical Outcomes Trust and Quality Metric incorporated, and SF12v2® is a Health Survey Standard, Germany [22].

A total of 4276 patients completed this QoL questionnaire. Mean scores and ranges overall were 48.9 (8.0–77.8) for mental health, 43.8 (12.8–68.5) for physical health, and 0.685 (0.35–1.0) for the health utility index. This means that both the mental health and the physical health of the patients are slightly below average results of the test population used to develop those scores (50.0 and 50.1 respectively in the general US population). Calculation of scores is described in detail by Ware et al. [23].

The mean scores and ranges by age are presented in the following table (Table 4).

In the following figure (Fig. 5), the raw data scores of the eight items (bodily pain, general health, mental health, physical functioning, role emotional, role physical, social functioning, and vitality) are depicted. Patients stated that they feel mostly impaired in general health and role physical.