key: cord-0307504-m7yjtlpa
authors: Prothero, L.; Cartwright, M.; Lorencatto, F.; Burr, J. M.; Anderson, J.; Gardner, P.; Presseau, J.; Ivers, N.; Grimshaw, J. M.; Lawrenson, J. G.
title: Barriers and enablers to diabetic eye screening: a cross sectional survey of young adults with type 1 and type 2 diabetes in the UK
date: 2022-05-24
journal: nan
DOI: 10.1101/2022.05.24.22275352
sha: 233b279672cb1b788f1cab16531c6322ce167bda
doc_id: 307504
cord_uid: m7yjtlpa

Introduction: Diabetic retinopathy screening (DRS) attendance in young adults is consistently below recommended levels. The aim of this study was to identify barriers and enablers of diabetic retinopathy screening (DRS) attendance amongst young adults (YA) in the UK living with type 1 (T1D) and type 2 (T2D) diabetes. Research design and methods: YAs (18-34yrs) were invited to complete an anonymous online survey in June 2021 assessing agreement with 30 belief statements informed by the Theoretical Domains Framework of behaviour change (TDF) describing potential barriers/enablers to DRS. Results: In total 102 responses were received. Most had T1D (65.7%) and were regular attenders for DRS (76.5%). The most salient TDF domains for DRS attendance were [Goals], with 93% agreeing that DRS was a high priority and [Knowledge], with 98% being aware that screening can detect eye problems early. Overall 67.4% indicated that they would like greater appointment flexibility [Environmental context/resources] and 31.3% reported difficulties getting time off work/study to attend appointments [Environmental Context/Resources]. This was more commonly reported by occasional non-attenders versus regular attenders (59.1% vs 23.4%, P=0.002) Most YAs were worried about diabetic retinopathy (74.3%), anxious when receiving screening results (63%) [Emotion] and would like more support after getting their results (66%) [Social influences]. Responses for T1D and T2D were broadly similar, although those with T2D were more likely have developed strategies to help them to remember their appointments (63.6% vs 37.9%, P=0.019) [Behavioural regulation]. Conclusions: Attendance for DRS in YAs is influenced by complex interacting behavioural factors. Identifying modifiable determinants of behaviour will provide a basis for designing tailored interventions to improve DRS in YAs and prevent avoidable vision loss.

What is already known about this subject?

• Younger adults (<35 years) with diabetes have been identified as having longer time intervals before attending initial diabetic retinopathy screening (DRS) and are more likely to miss successive screening appointments.

• Previous studies have explored modifiable influences on DRS attendance, but often do not differentiate between population groups, particularly young adults.

What are the new findings?

• One of the main reported barriers to attending DRS was the lack of appointment flexibility and difficulty getting time off work/study to attend appointments. This was compounded by the lack of integration of DRS with other diabetes appointments.

• Most young adults were worried about diabetic retinopathy, anxious when receiving screening results and would like more support How might these results change the focus of research or clinical practice?

• A more tailored approach is needed to support young adults to attend DRS. The findings of this research provide a basis for developing tailored interventions to increase screening uptake in this age group . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

Despite evidence supporting the effectiveness of diabetic retinopathy screening (DRS) in reducing the risk of sight loss, attendance for screening in particular demographic groups is consistently below recommended levels. [1] Understanding modifiable barriers and enablers to DRS is essential to develop tailored intervention strategies to improve screening uptake.

There have been many studies internationally that have investigated the factors influencing DRS attendance. [2] [3] Barriers/enablers to attendance potentially operate at different levels, including the person with diabetes, the healthcare professional or the healthcare system. Furthermore, factors influencing individual screening attendance are likely to differ according to the presence of variables that are known to impact on health equity, e.g. type of diabetes, ethnicity or socioeconomic status. [4] [5] [6] [7] However, studies have often considered people with diabetes as a homogenous group and relatively few studies have addressed barriers/enablers in particular population subgroups.

One demographic group where adherence to DRS consistently falls below recommended levels is young adults (YAs) with diabetes aged under 35 years. [8] [9] [10] [11] Recent studies from the UK Diabetic Eye Screening Programme (DESP) have shown that the time interval from registration with the screening programme to DRS attendance is significantly longer for the 18-34-year age group, with approximately 20% remaining unscreened three years after registration. [10] Furthermore, younger adults (<35 years) are more likely to miss three successive DRS appointments. [11] This is a particularly hard to reach group and there has been little previous research to understand the reasons for poor DRS attendance in YAs. [12] A 2017 Australian study [13] conducted semi structured interviews with YAs, N=10 aged 18-39 years and older adults, N=20 aged over 40 years with type 2 diabetes (T2D). This study utilised a behavioural science framework, the Theoretical Domains Framework [TDF]), [14] to explore the wide range of barriers and enablers to attendance. The TDF synthesises constructs from 33 theories of behaviour change into 14 domains, representing individual, socio-cultural and environmental influences on behaviour (e.g. knowledge, emotions, social and professional identity, perceived consequences, intention, environmental context and resources). Although younger and older adults shared several screening behaviour determinants, a number of TDF domains showed greater salience to YAs including: misconceptions regarding diabetic retinopathy [Knowledge] ; social comparison with others [6] ; unrealistic optimism and perceived invulnerability [Beliefs about consequences]; and lack of time and financial resources [Environmental context and resources] [13] . We have recently completed the NIHR-funded 'Enabling diabetic RetinOpathy Screening: Mixed methods study of barriers . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. ; https://doi.org/10.1101/2022.05.24.22275352 doi: medRxiv preprint and enablers to attendance (EROS study)', which aimed to identify barriers and enablers to DRS attendance experienced by YAs with diabetes living in the UK. A part of this research we conducted qualitative interviews with 29 YAs with type 1 diabetes (T1D) aged [18] [19] [20] [21] [22] [23] [24] [25] [26] [27] [28] [29] [30] [31] [32] [33] [34] years. [15] We similarly applied the TDF to identify modifiable barriers and enablers to DRS attendance. Key In the current study, we used the results of the previous interview study [15] to design an online survey to assess the generalisability of the perceived barriers and enablers in a more diverse sample of YA with regard to particular demographic characteristics (e.g. age, employment, gender, ethnicity, educational level). We also investigated differences in perceived barriers and enablers between YAs with T1D and T2D and in those that attend DRS regularly versus those who did not. The survey also served to triangulate findings from qualitative and quantitative methods to gain a more complete picture of the factors that influence screening uptake in YAs. [16] Research design and methods Design A cross-sectional web-based survey.

This study received ethical approval from the NHS Wales Research Ethics Committee 2 (REC reference: 19/WA/0228). Prior informed consent was obtained from all participants.

Eligible participants included YAs aged 18-34 years with diabetes. Previous studies have shown that people in this age group are least likely to attend DRS and have high rates of referable retinopathy. [8] [10, 11] As this was a descriptive survey, we did not have a predefined target sample size in mind and aimed to maximise response rate from as many YAs as possible. Two recruitment strategies were used:

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The full survey is available in Supplementary file S2. In brief, the survey was developed based on guidance for conducting surveys using the TDF [17] and the findings of our previous interview study with YAs in the UK. [15] The survey was fully anonymous and divided into three sections:

• Section 1 Participant demographics: age, gender, ethnicity, geographical location, highest level of education; type and duration of diabetes; screening appointments missed in the last 3 years (either forgotten and rescheduled or deliberately not attended) (12 questions).

• Section 2 Perceived influences on DRS attendance: Participants were presented with 30 belief statements representing barriers and enablers to DRS attendance. These statements were developed based on the inductively generated themes based on frequency and elaboration from our semi-structured interview study with young adults in the UK [15] (e.g., the theme 'Diabetic retinopathy is a concern' was reflected in the belief statement 'I worry about diabetic retinopathy')). To ensure theoretical coverage and that the wide range of potential influences were considered, belief statements covered 13 of the 14 TDF domains (our earlier qualitative study [15] did not identify themes for the domain Optimism). Participants rated their agreement with each statement using a 5-point Likert scale (strongly agree strongly disagree).

• Section 3: Free text question 'Please describe any other factors which influence your attendance at diabetic eye screening which we have not covered'

To assess participant burden, clarity of questions and face validity, a draft questionnaire was sent to the project Patient and Public Involvement (PPI) panel consisting of four YAs with diabetes, who were asked to comment on the following:

• How long the survey takes to complete . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) 

The survey took place in June 2021. The questionnaire was hosted online using Qualtrics Survey Software (https://www.qualtrics.com/uk/core-xm/survey-software/). The survey was fully anonymous, and participants consented to participate in the survey by completing a brief consent form on the survey home page. Respondents were offered an incentive in the form of the chance to win a £20 Love2shop voucher (we offered twenty £20 vouchers).

After the closure of the survey, all data were imported into an Excel spreadsheet. Data were summarised using descriptive statistics (percentages [n)). For the responses to the 5-point scale in Section 2, scores for 'Strongly agree' and 'Somewhat agree' were combined into an overall mean and percentage agreement score.

Statistical analysis for comparison between participants with T1D and T2D and pattern of attendance (regular attenders versus occasional non-attenders), was carried out using MedCalc Statistical Software version 18 (MedCalc Software, Ostend, Belgium; http://www.medcalc.org) in the form of Chi-squared tests to determine differences in endorsed barriers and enablers. Occasional non-attenders were grouped as those who had either (a.) unintentionally forgotten/missed previous appointments and rescheduled, or (b.) actively chosen to not attend on at least one occasion.

Free text survey responses were coded thematically by a single investigator (JGL) to identify common themes and concepts.

One hundred and two responses were received. Detailed respondent demographic characteristics are presented separately for respondents with T1D and T2D in Table 1 (two participants reported having an 'other' type of diabetes (e.g. maturity onset diabetes of the young (MODY)). Almost all respondents (98.5%) were located in England. The greatest proportion of respondents were female (59.8%), had T1D (65.7%), were aged 30-34 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted May 24, 2022. ; https://doi.org/10.1101/2022.05.24.22275352 doi: medRxiv preprint (52.9%), identified as White British (57.8%), employed (76.4%) and educated to degree level or higher (60.8%).

Most respondents were regular attenders for eye screening, with 76.5% having not missed a DRSs appointment in the last three years.

The results of agreement/disagreement with belief statements related to barriers/enablers to diabetic retinopathy screening are presented in Table 2 , and Figure 1 CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. ; Percentage agreement between YAs with T1D and T2D were broadly similar ( Table 2) . Statistically significant differences were found for only three statements. Persons with T1D

were more likely to feel overwhelmed by their diabetes (76.9% vs 56.7%, P=0.046)

[Emotion]. YAs with T2D were less comfortable in disclosing their diabetes to others (77.6% vs 57.6%, P=0.039) [Social identity] and were more likely have developed strategies to help them to remember to attend their DRS appointments (63.6% vs 37.9%, P=0.019)

Free text responses were received from 30 respondents. These covered the following areas:

impact of the Covid pandemic on scheduling DRS appointments ('Last appointment later due to Covid'); fear of vision loss ('My mother In law lost her eye due to diabetic (retinopathy)'); appointment inflexibility ('They can also be inflexible-the nearest one to me only does Tuesday mornings'); impact of eye drops and transport issues ('They can be difficult to get to, especially as you cannot drive-in one occasion I had to get 3 buses which took nearly 2 hours-the return trip with dilated pupils wasn't fun'), interactions with screening staff and issues with receiving screening results ('I always receive letters that are extremely distressing and usually on a weekend when I cannot call anyone'). The complete set of free text comments can be found in the supplementary material.

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Other/NR 2 (3.0) 

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The copyright holder for this preprint this version posted May 24, 2022. ; 1 2 Table 2 Mean scores and percentage agreement with belief statements representing barriers and enablers to diabetic retinopathy screening. The mean scores correspond to the extent to which participants agreed with each statement using a 5-point Likert scale (strongly agree=1; somewhat agree=2; neither agree nor disagree=3; somewhat disagree=4; strongly disagree=5). The p-value represents the results of the Chi-square test for differences between type 1 (T1D) type 2 diabetes (T2D) sub-groups and between regular attenders (RA) and occasional non-attenders (ONA is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. 

This study aimed to build on the findings of our earlier qualitative interview study to identify perceived barriers and enablers to DRS in YAs in the UK. [15] The results broadly confirmed our qualitative interview findings in YAs with T1D and converged with the findings from a qualitative study of YAs with T2D in Australia. [13] Based on the level of agreement with each belief statement, the most salient TDF domains associated with DRS included 'Social influences', 'Intentions', 'Emotion', 'Environmental context/resources', 'Knowledge', 'Skills', and 'Goals'. However, the level of agreement with belief statements differed between respondents with T1D and T2D and between regular attenders and occasional non-attenders. This emphasises the importance of understanding barriers/enablers for specific population sub-groups.

Overall, survey respondents represented a well-engaged population, with approximately 78% reporting that they had not missed any screening appointments in the last 3 years. This may explain the high level of understanding of the purpose of DRS, the high priority (Goals)

given to this particular aspect of diabetes care and the strong intention to attend further screening appointments. However, despite a large majority understanding the purpose of DRS and the need for regular screening, there were specific knowledge gaps such as an awareness of the treatments available should sight-threatening retinopathy be detected. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. ;

The eye drops used to temporarily dilate the pupils were perceived to be unpleasant by the majority respondents. Free text comments also alluded to the impact of the eye drops on attendance due to not being able to drive to and from the screening venue and having to rely on family members or use public transport ('With the drops you can't drive but it's also hard to then see where the train is. The drops knock me out for the rest of the day and really affect work and everything'). Previous studies have also reported on barriers relating to dilating eye drops [18] . The National Screening committee (NSC) in the UK currently recommends pupil dilation (mydriasis) for all attendees for DRS based on the ease of organisation and improvement in image quality, however there is evidence that using mydriasis only when clinically necessary can be effective for DRS. [19] Fear of diabetic retinopathy was identified as a cause for concern, with a high level of agreement that screening attendance provided reassurance. However, there was a particular anxiety associated with receiving screening results and a desire for more support and information on receiving results. The previous literature identified that whilst, for some, the fear of losing vision is a strong incentive to attend DRS, for others, the fear of a diagnosis of diabetic retinopathy may act as a barrier [18] . Interventions to address this could include training suitably qualified screeners to give immediate feedback on the results of eye screening or the provision of more support after receiving results. This strategy is potentially acceptable to implement in practice, with a recent cross sectional survey of healthcare professionals working in the UK National Diabetic Eye Screening Programme highlighting that screening providers would like to be more involved in discussing screening results with YAs and promoting diabetes self-management. [20] A recommendation by a healthcare professional (HCP) has been shown to be an important enabler for DRS uptake and receiving a recommendation from a healthcare provider to attend screening is associated with improved attendance. [2, 13] However, survey respondents reported that members of the diabetes team did not always check their DRS attendance record or encourage them to attend. This is clearly a missed opportunity to improve screening uptake in this population.

T2D is increasingly prevalent in YAs. This trend is particularly pronounced in South Asian ethnic groups. [21, 22] Previous research has established that YAs with T2D are at higher risk of developing diabetic retinopathy, [23,24] face unique barriers to diabetes self-management and have specific unmet psychosocial needs.

[25] Although all participants in our earlier interview study [15] had T1D, 32% of respondents in the current study were YAs with T2D.

The levels of agreement between these sub-groups were very similar, with significant differences in agreement found for only three belief statements ('I sometimes feel . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

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One of the strengths of the current study is that it addresses an important evidence gap.

Although there are many studies that have reported modifiable barrier/enablers to DRS [2, 3] , the majority of these studies tend to treat people with diabetes as a homogeneous group, and therefore, it is not possible to identify determinants of DRS uptake from the perspective of particular population subgroups. Relatively few studies have reported barriers from the perspective of YAs, who are at a high risk of developing sight-threatening retinopathy. [10, 23, 24] Another strength of our approach is the use of a theory-informed methodology to identify barriers and enablers. [14] We used the TDF to guide data collection, which provides a basis for generating future behaviour change strategies that can be tailored to YA to address barriers or enhance facilitators.

Although this hypothesis-generating study was limited in terms of its small sample size, we received responses from a demographically diverse sample of YA, including 33% of responses from YA with T2D. The results confirmed many of barriers and enablers identified in previous qualitative interview studies [13, 15] and suggest that that the determinants of screening attendance are broadly similar for YAs with T1D and T2D.

The main limitation was the difficulty experienced in recruiting non-attenders. Despite using a variety of recruitment strategies (see Appendix), only 20% of survey respondents had missed a DRS appointment in the last 3 years and nearly all of these had unintentionally missed the appointment (i.e. they forget or were unable to attend). We were only able to recruit two participants who had made a deliberate decision not to attend DRS), which could impact on the generalisability of the findings to repeat non-attenders.

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Barriers identified in the current study included the lack of appointment flexibility, impact of the eye drops used to dilate the pupils and anxiety associated with the risk of developing diabetic retinopathy. More consistent checking of DRS attendance by the diabetes team and encouragement to attend could be an important enabler. These findings highlight recommendations for changing policy and practice, including pinpointing to specific intervention strategies that could potentially address identified barriers and enablers and increase attendance to DRS in this priority population group. Future research should address the challenges of engaging with socially disadvantaged and hard to reach groups to ensure that they are not excluded. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

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Survey exploring young adults' views about factors influencing diabetic eye screening attendance in the UK Researchers at City University of London would like to invite people aged 18-34 years living with diabetes, to complete an online survey that explores a number of issues that may affect their attendance at diabetic eye screening and views on the screening process. The information you provide will help the researchers to make specific recommendations to improve the eye screening service.

The survey will take approximately 10 minutes to complete and you can take part here.

There will be an opportunity to enter a prize draw to win one of twenty Love2shop £20 vouchers.

For more information please contact Professor John Lawrenson at j.g.lawrenson@city.ac.uk . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

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The purpose of the survey is to explore young adults' views about factors influencing diabetic eye screening attendance. The information you provide will help us to make recommendations in order to improve the eye screening service.

The survey will take approximately 10 minutes to complete. Before completing the survey, you will be asked to provide your consent to participate and some information about yourself. The information you provide will be used to describe who took part in our survey as a whole. Everyone's responses will be combined so you will not be identifiable.

Should you wish to enter the prize draw, you will be asked to provide a contact email address. Your e-mail address will be separated and stored separately from your survey responses, and will only be used to contact you if you are picked from the prize draw to win a £20 Love2shop voucher. Following the prize draw, all e-mail addresses provided will be deleted.

This survey is part of a wider study (the EROS study), which has been approved by The EROS Study team . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. ; https://doi.org/10.1101/2022.05.24.22275352 doi: medRxiv preprint o I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without my legal rights being affected o I understand that all data and results from this study will be treated strictly confidential and anonymised, so that no individual can be identified from the data. o I understand that data collected about me during this study will be stored on a secure database at City, University of London for use by the research team to enable them to analyse the data o I agree to take part in this study

England Northern Ireland Scotland Wales

Urban (e.g. city centre) Suburban (e.g. residential area on the edge of a large town/city) Rural (e.g. countryside) . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. ; 3 1 

Please describe any other factors which influence your attendance at diabetic eye screening which we have not covered COVID

• Epidemic virus • Covid pandemic • Last appointment later due to Covid

• Not able to drive somewhat dependant on others • Not being able to drive and therefore having to find transport • They can be difficult to get to, especially as you cannot drive-in one occasion I had to get 3 buses which took nearly 2 hours-the return trip with dilated pupils wasn't fun. They can also be inflexible-the nearest one to me only does Tuesday mornings-ok so now I have to take a full days annual leave (I can't read with dilated pupils so no use me going in for the afternoon) and as I need a lift to get there my husband also has to use annual leave. Also no one will tell you anything-what can you see? Is it worse than last year? Is it better? They just say wait for the results and 6 weeks of anxiety later you get a generic letter and leaflet with a grade on it but no details-fine it's background but is it better/worse what is going on with my eyes?! Oh and my diabetologist can't view the results, he relays on me to tell them the grading. Screening feels like it's not for my benefit or my care but to meet a target. • It would be easier if it was easier to get to. With the drops you can't drive but it's also hard to then see where the train is. The drops knock me out for the rest of the day and really affect work and everything • Locations easy to access on public transport • Just that your eyes stay bluey for the whole day so it almost means you have to have the rest of the day off work if you have to read things as part of your job like I do. Would be better if they did eye screens in the evening so the drops water off when you're not trying to work. • I much prefer having the screening during the evening during winter as the sunlight really hurts my eyes • Travel distance and routes • Sometimes it's hard someone to attend the appointment with me. Which can make attendance more difficult • Distance of screening location . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. • Un knowledgeable screening staff saying everything looks fine then getting a letter stating background retinopathy is very disheartening. Hard to get time off work for appointments. Horrible always being surrounded by old people in the waiting room -would LOVE a clinic just for younger people, helps to meet people in situations like mine. I have a huge fear of anything going in my eye so am terrified of any potential treatment needed. Some staff being too rigid on guidelines around the eye drops, my pupils are always huge and some staff don't give me the drops and some say they have to even though I don't need them just because I'm over 25

• I haven't received any appointments • I am supposed to have my eyes screened annually but have only had 3 appointments in 6 years and very often my mum has to phone and ask for an appointment. I have little confidence in the screening program. • Un knowledgeable screening staff saying everything looks fine then getting a letter stating background retinopathy is very disheartening. Hard to get time off work for appointments. Horrible always being surrounded by old people in the waiting room -would LOVE a clinic just for younger people, helps to meet people in situations like mine. I have a huge fear of anything going in my eye so am terrified of any potential treatment needed. Some staff being too rigid on guidelines around the eye drops, my pupils are always huge and some staff don't give me the drops and some say they have to even though I don't need them just because I'm over 25 • Try to give slots for weekends • I'm really unorganised and struggle to book time off work and then end up forgetting the appointment entirely. Possibly related to dyslexia. • Un knowledgeable screening staff saying everything looks fine then getting a letter stating background retinopathy is very disheartening. Hard to get time off work for appointments. Horrible always being surrounded by old people in the waiting room -would LOVE a clinic just for younger people, helps to meet people in situations like mine. I have a huge fear of anything going in my eye so am terrified of any potential treatment needed. Some staff being too rigid on guidelines around the eye drops, my pupils are always huge and some staff don't give me the drops and some say they have to even though I don't need them just because I'm over 25 • They can be difficult to get to, especially as you cannot drive-in one occasion I had to get 3 buses which took nearly 2 hours-the return trip with dilated pupils wasn't fun. They can also be inflexible-the nearest one to me only does Tuesday mornings-ok so now I have to take a full days annual leave (I can't read with dilated pupils so no use me going in for the afternoon) and as I need a lift to get there my husband also has to use annual leave. Also no one will tell you anything-what can you see? Is it worse than last year? Is it better? They just say wait for the results and 6 weeks of anxiety later you get a generic letter and leaflet with a grade on it but no details-fine it's background but is it better/worse what is going on with my eyes?! Oh and my diabetologist can't view the results, he relays on me to tell them the grading. Screening feels like it's not for my benefit or my care but to meet a target.

• Last time my results weren't sent to me and I had to chase for them. Results need to be provided in a timely fashion.

.

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The copyright holder for this preprint this version posted May 24, 2022. • I always receive letters that are extremely distressing and usually on a weekend when I cannot call anyone. Such as, "if things continue you will go blind in one eye" it is so scary and that is what I dread about these appointments. • I was notified that I had some eye damage-but it didn't need to be treated at this point-no one contacted me or explained the letter.

• Lack of guidance on how important it is, how to look after the eyes, nervousness of results • They can be difficult to get to, especially as you cannot drive-in one occasion I had to get 3 buses which took nearly 2 hours-the return trip with dilated pupils wasn't fun. They can also be inflexible-the nearest one to me only does Tuesday mornings-ok so now I have to take a full days annual leave (I can't read with dilated pupils so no use me going in for the afternoon) and as I need a lift to get there my husband also has to use annual leave. Also no one will tell you anything-what can you see? Is it worse than last year? Is it better? They just say wait for the results and 6 weeks of anxiety later you get a generic letter and leaflet with a grade on it but no details-fine it's background but is it better/worse what is going on with my eyes?! Oh and my diabetologist can't view the results, he relays on me to tell them the grading. Screening feels like it's not for my benefit or my care but to meet a target.

• To be honest I find it kind of pointless as my Opticians maintains a better, easier access for support and help if I feel there is a problem, also they explain the results the doctors at the screen don't tell me anything. • Un knowledgeable screening staff saying everything looks fine then getting a letter stating background retinopathy is very disheartening. Hard to get time off work for appointments. Horrible always being surrounded by old people in the waiting room -would LOVE a clinic just for younger people, helps to meet people in situations like mine. I have a huge fear of anything going in my eye so am terrified of any potential treatment needed. Some staff being too rigid on guidelines around the eye drops, my pupils are always huge and some staff don't give me the drops and some say they have to even though I don't need them just because I'm over 25 • They can be difficult to get to, especially as you cannot drive-in one occasion I had to get 3 buses which took nearly 2 hours-the return trip with dilated pupils wasn't fun. They can also be inflexible-the nearest one to me only does Tuesday mornings-ok so now I have to take a full days annual leave (I can't read with dilated pupils so no use me going in for the afternoon) and as I need a lift to get there my husband also has to use annual leave. Also no one will tell you anything-what can you see? Is it worse than last year? Is it better? They just say wait for the results and 6 weeks of anxiety later you get a generic letter and leaflet with a grade on it but no details-fine it's background but is it better/worse what is going on with my eyes?! Oh and my diabetologist can't view the results, he relays on me to tell them the grading. Screening feels like it's not for my benefit or my care but to meet a target.

• My mother In law lost her eye due to diabetic is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. 

• In pregnancy I have to attend an eye hospital retinal screening appointment every 8 weeks until 2 months after delivery.

• So far the diabetic screening where I attended is very efficient .

It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 24, 2022. 

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