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Abstract

Myopia (short-sightedness) in children is a public health concern, as prevalence and severity are rising. By 2050, half the world population may have myopia, with a fifth at risk of uncorrectable sight-loss. Effective treatments to slow the worsening of myopia are not publicly funded. Here we aimed to complete the first 2 of these stages of designing an effective myopia advocacy campaign, that is, issue identification and research/analysis. We carried out a literature review on myopia/eye care advocacy campaigns and an online key stakeholder survey with exploratory open-ended questions distributed to a convenience sample of 30 individuals known from previous informal discussions, including parents, a young adult, facilitators/representatives of UK and European myopia patient advocacy groups/charities, professional organizations and industry. We extracted data from included publications into a prespecified table and used thematic analysis to summarize survey responses. The main issues identified are perceived lack of public/professional awareness, complications and interventions, and public funding. The most important rationales for eye-healthy behavior and interventions are: short/medium-term improvement in quality of life linked to lower levels of short-sightedness, and long-term reduction of risk of sight-threatening complications and healthcare costs. A myopia advocacy campaign should increase public/professional awareness, provide education and information for eye/healthcare practitioners, families, teachers and other professionals, lead to public funding, and promote collaborations between stakeholders to enable funding for appropriate interventions.

Keywords

myopia advocacy engagement children stakeholders public health

Introduction

Clinicians, researchers, and international organizations including the World Health Organization warn of the rising prevalence of myopia and the associated risk of permanent sight loss from myopia-related complications.^1-3 Myopia management interventions (MMI) with evidence-based safety and efficacy have become available in many European countries. These include special glasses and contact lenses which blur the midperipheral visual field (peripheral plus lenses), glasses which modify contrast perception (diffusion optics technology), and low-concentration atropine eyedrops. However, none of these are currently not or only partially funded by public health systems. This leads to inequity of access, as parents/carers need to cover the costs. Myopia may disproportionately affect children and young people (CYP) from ethnic minority and poorer families,⁴ exacerbating the problem of accessibility and creating a reduction in life chances.

European countries have publicly funded healthcare systems, and in many, the cost of standard glasses for children is covered by public funds or private health insurances. Decisions about allocation of funds are made based on population needs and take into consideration not only the efficacy and safety of new treatments, but also their impact on quality of life and cost-savings in the longer term.

Patient advocacy groups and charities represent individuals with chronic, developmental, or incurable conditions, but there are only few myopia-specific groups or campaigns.⁵ Myopia is currently often considered an inconvenience, with glasses or contact lenses readily correcting distance vision. However, potential long-term complications make it a health concern, and an advocacy campaign is needed to raise awareness and unlock public funding to address inequity.

Health advocacy involves a range of actions to influence decision-makers, such as lobbying, raising awareness, and media campaigns. Planning can follow the “advocacy cycle,” which includes 5 principal stages: issue identification, research/analysis, planning, action, and evaluation.⁶

To enable stakeholders to develop an effective myopia advocacy campaign, the present work aims to complete the first 2 of these stages, that is, issue identification and research/analysis.

Method

Literature review and survey informed both issue identification and research/analysis stages.

Literature Review

On September 13, 2023, we searched a single database, PubMed, across its default search range (from 1949 until day of the search), using the search terms myopia, social media, advocacy, campaign, prevention program, prevention program, awareness, ophthalmology, including Boolean operators (Supplemental Table 1). We used the following inclusion and exclusion criteria.

Inclusion

Primary and secondary research, including systematic reviews and meta-analyses, in English, German, or French language, describing activities

including use of any media channels and

in any setting, including educational and community settings, to promote;

implementation/uptake of myopia-management interventions;

myopia awareness in members of the public and postgraduate eye care professionals; and

public funding.

Exclusion

Reports of efficacy and safety of myopia management interventions in terms of ophthalmic outcomes;

Animal studies;

Educational activities for undergraduate students including those using online and social media;

Surveys of practitioners’ awareness/knowledge without advocacy activities; and

Languages other than English, German, and French.

Two authors (ADN and HN) independently reviewed titles and abstracts, resolved disagreements by jointly reviewing and discussing the abstracts, then independently reviewed papers included for full text review, again resolving disagreements by joint discussion before extracting information into a prespecified table (Input, Activities, Output, Outcomes, and Impact, Supplemental Table 2). A third reviewer for disagreement resolution was not required.

Online Stakeholder Survey

Based on the information from the literature review and prior informal individual discussions with stakeholders, we drew up a list of exploratory, open-ended questions eliciting suggestions for potential solutions, resources, and decision-makers (Supplemental Table 3). We used an online electronic platform, SmartSurvey^TM, which allows the creation of surveys with different types of questions and response formats, online distribution to a target group of participants, collection of responses, and export of results in various formats. We sent the questionnaire to a convenience sample of 30 individuals known from previous informal discussions, including parents of CYP using MMI, a young adult using MMI, facilitators/representatives of UK and European patient advocacy groups/charities, representatives of UK vision-research charities, representatives of UK eye care professional (ECP) bodies, a representative of a European ECP organization, National Health Service (NHS) leaders who are ECP, ECP/applied researchers, employees of UK government departments, a representative of a UK online myopia petition campaign (myopiafocus.org), and industry/Global Myopia Awareness Campaign representatives.

We exported the collected responses from SmartSurvey^TM into a Microsoft Excel^TM spreadsheet for analysis. Within Excel^TM, we summarized demographic data using descriptive methods and analyzed responses using thematic analysis,⁷ until agreement was reached on topics raised.

Lastly, Moorfields’ National Institute for Health Research Generation R Young People's Advisory Group for eye and vision Research (eye-YPAG) held a session on myopia advocacy and developed sketches to visualize change that could result from a future myopia advocacy campaign.

Ethical approval and consent to participate were not required.

Results

Literature Review

The literature search (Supplemental Table 1) generated 950 titles. After removal of 38 duplicates, 912 titles were screened, of which 843 were excluded as not relevant. Of 69 screened abstracts, 25 were excluded. Forty-four full-texts were reviewed for eligibility; 25 did not meet the inclusion criteria. Nineteen were included for data extraction (Figure 1).

Figure 1.

PRISMA flowchart of literature review.

Stakeholder Survey

Participant Background

Between July 06, 2023 and August 03, 2023, 25 responses were collected (response rate 83%). Most respondents lived in the United Kingdom (n = 21, 84%), and most were adults affected by myopia (n = 8, 32%), optometrists (n = 4, 20%), and parents/carers of young people with myopia (n = 3, 12%) (Table 1). Two (8%) had previously been involved in a myopia campaign. One reported having contributed to work presented to the Welsh Optometric Committee and then to Health Technology Wales (public healthcare assessment agency), with the outcome pending. The other came from an optometry practice which had aimed to raise awareness by providing information on the practice website and via client-facing staff.

Table 1.

Respondents’ Characteristics: Country of Residence, Role in the Context of Myopia.

Country of residence	%	N
The UK—England	68%	17
The UK—Wales	12%	3
Germany	4%	1
The Netherlands	4%	1
The USA	4%	1
Canada	4%	1
Group answer: The UK, Germany, the Netherlands	4%	1
Total	100%	25
Role in the context of myopia	%	n
Adult affected by myopia	32%	8
Adult affected by myopic macular degeneration	4%	1
Adult affected by myopic macular degeneration and parent to children with myopia	4%	1
Macular Society Myopic Macular Degeneration group members	4%	1
Representative of a charity	4%	1
Parent/carer of a child/young person with myopia	12%	3
Child/young person affected by myopia	8%	2
Eye care professional:
Optometrist	20%	5
Ophthalmologist	4%	1
Representative of a company/industry	4%	1
Researcher	4%	1
Total	100%	25

Issue Identification (Stage 1 of Advocacy Cycle)

Findings From the Literature Review

Most of the included publications describe advocacy campaigns to increase public awareness of “eye-healthy behavior” and the link between myopia and sight-threatening complications in later life (Supplemental Table 2). Some identify eye and healthcare professionals as target and “influencers,” and highlight the need to raise awareness among professionals as well.

Findings From the Survey

Across questions in the survey, “issues” highlighted by respondents included lack of public and professional awareness of myopia as potentially serious eye condition, associated complications, eye-healthy behavior, and funding for MMI.

Research and Analysis (Stage 2 of Advocacy Cycle)

Findings From the Literature Review

Internationally, myopia and eye health advocacy campaigns have been funded by government departments (health, public health, and education) and organized by eye care professionals and researchers, employees of governmental and nongovernmental organizations, patient advocacy groups (PAGs), patients and their families, and members of the public (Supplemental Table 2). Wide-ranging activities have been used, such as education/awareness campaigns in schools, digital messaging, social media posts and video clips, outdoor activities, incentivizing reward systems for children and families to adopt eye-healthy behavior. Campaigns were aimed at children/young people, parents/carers, educators, eye/paediatric/other healthcare professionals, and potential funders. Measured outcomes included changes in time spent outdoors, physical activities, screen time, and knowledge about myopia. In Taiwan, China, and Singapore, a reduction in the prevalence of myopia in younger age groups was observed as long-term impact (Supplemental Table 2).

Findings From the Survey Ideal Provision of Myopia Care for Children and Young People

Responses fell into 4 themes: public and professional awareness of myopia, associated complications and available MMI, education and information for eye and healthcare practitioners (ECP/HCP), families, teachers and other professionals, funding for MMI, and collaborations between different stakeholders to improve access to MMI.

Public and professional awareness: Respondents stated that lack of awareness by EPCs may cause delays in families being offered MMI, and may leave finding out about MMI and providers to the family's initiative, for example: “I would like all opticiants to be aware of the issue” (Table 2). Public awareness should be raised about signs of myopia in children (having to look at things close-up), the possible benefit of increased time outdoors on delaying onset and slowing progression, and about myopic macular degeneration (MMD) and irreversible sight loss, with MMI lowering the risk of these complications, for example: “We should focus on education in schools (teachers and parents) and neighborhood opticiants,” “Prevention is the ideal option,” and “Protect the visual future of patients” (Table 2).

Education for ECPs: Participants listed risk factors for myopia development, progression (family history, increasing time spent outdoors, age of onset and faster progression with younger age) and MMI (optical and pharmacological). For all HCP who provide care for CYP, education about myopia, lifestyle interventions (more time outdoors), and MMI was recommended to facilitate early diagnosis and treatment. Information on the same topics should also be given to families, teachers, and schools (Table 2), including advice on regular eye checks from a young age, so they would be become “the norm,” like dental checks. Every child diagnosed with myopia, and their parents/carers, should be given information about available options. Information for policy makers and funders should include that myopia should be regarded as a preventable illness, which increases the risk of ill eye health, vision loss, and blindness in later life.

Participants felt that the NHS should fund or re-imburse MMI for all CYP, or at least for those at risk of or with established progression. Rationales given for NHS funding included the existing free provision of standard single-vision spectacle lenses and frames, formal education being both compulsory and a risk factor for myopia, the NHS and social care costs for late complications outweighing the cost of MMI: “making myopia control products widely available” and “reducing the burden on health and social care systems in the future” (Table 2). At the same time, it was recognized that the costs of MMI could be lowered by manufacturers, both to individual parents/carers and to the NHS. The provision of MMI should be supported until myopia has stabilized and/or formal education, including higher education, is completed.

Collaborations between key stakeholders in the optical, pharmacological and device industries and the NHS, for example via specialist centers, could develop strategies to make MMI accessible. Bringing commercial preparations of pharmacological options to the market would increase access via those qualified to prescribe medication. Increasing the number of optometrists qualified to prescribe independently would increase it further.

Table 2.

Selected Verbatim Quotes From Survey Responses.

What would the ideal provision of myopia care for children and teenagers look like, ie, what should we advocate for?
Public and professional awareness
I would like all opticians to be aware of the issue and all the treatment options available. I feel extremely let down that the optician my daughter was originally being monitored by waited so long before mentioning the myopia control lenses, which allowed her condition to deteriorate much more than it could have done had we have known sooner. I felt concerned and started to do my own research (…). I know lots of parents don't do this and there are therefore so many children that are not getting the best treatment available.
Education and information
We should focus on education in schools (teachers and parents) and neighborhood opticians—these are the people who can spot myopia and are in a position to encourage parents to do something about it
I think it is important that every child as a minimum is informed of the options available to them
Public funding or re-imbursement of MMI
I also feel the myopia treatment options for children should be made available on the NHS like the standard glasses are
Myopia to be classified as a preventable illness which increases the chances of eye illness, visual loss, and blindness in later life. Prevention is the ideal option (…), prevention for all children with healthy eyes into early adulthood
Collaboration of key stakeholders within optical, pharma, and equipment

In your view, why is it important to slow down myopia progression in children and young people?
Complications and sight loss in later life
I started wearing glasses aged 9. I am now 78. Every year of my life my myopia has increased. My eyeballs are about 32 mm, 30% larger than normal. My optic discs are so pale and tilted consultants don't know what to make of my sight. Too late for me, but if myopia could be slowed for the next generation it would be wonderful. And probably save the NHS/taxpayer quite a lot of money
Protect the visual future of patients. Stop the stretch!
Being born in the 1970's, I am now suffering from the horrific effects of high myopia which progressed since a young age. At 45, I suffered a myopic CNV (choroidal neovascular membrane) and it likely that I will probably suffer blindness in the future
Impact of myopia on children
I wanted my children to have as normal a life as possible, without the restrictions that poor sight can bring. When my son's myopia first became problematic, and he was only offered glasses, he was unable to play football, etc, comfortably. He was anxious and reluctant. As he got older and became aware of how much his sight was deteriorating, he became more anxious
For young people in the future to have a better quality of life.
Cost of myopia correction to affected people
It will also save money on glasses and contact lenses, especially when children's eyes grow and their prescription changes on a regular basis
If you can improve the quality of life, vision unaided, and cost of spectacles later on, access to jobs in the future, and reduce the risk of future ocular disease, why wouldn't you!?
Reduction of costs for health and social care related to late complications
To reduce both the absolute prevalence of myopia (try to stop people becoming myopic at all) and the degree of myopia (reduce the number of people with higher levels of myopia) as a means of reducing the burden on health and social care systems in the future due to myopia-related eye health issues and sight loss
To prevent high myopia and associated degenerative conditions in later life, to save public money, to improve life quality

Why do health insurances or the government/public health system not cover myopia control products?
Financial barriers
Presumably because of the cost involved over many years
Lack of awareness of myopia and impact/cost of lase complications
Prevention is not actively taken into account in healthcare policy in the UK, and myopia is not seen as an important issue in the UK (parent).
It is unlikely that the UK government (either elected members or civil servants) has any real awareness or understanding of (a) the impact of myopia-related eye health issues, or (b) interventions to control myopia
I do not know. It is a treatable health condition which, if not treated, could lead to blindness or disability which a healthcare system will have then to deal with
Lack of long-term evidence on effectiveness and impact of MMI
Probably insufficient evidence of long-term impact would be cited as main reason although it is more likely to be the increased costs to the public purse
Lack of confidence in evidence on behalf of the NHS

What would be the best possible result of a myopia advocacy campaign?
Raised awareness
Myopia becomes a common discussion topic. Sight tests get taken seriously. A different attitude to myopia, which does not dismiss it as something society just accepts, is what will bring about change. For example, official recognition of myopia as a preventable illness
Funding for MMI and more research into myopia
Making myopia control products widely available, increase funding for myopia research
Lowering of cost of myopia control for parents/carers and funding of research for effective treatment of sight-threatening complications in adults
Reduction in the number of people with myopia and those affected by sight-threatening late complications of myopia
To stop today's children becoming blind in the future
Less adults with myopia related vision loss
Intervention customized to individual risk

Abbreviations: MMI, myopia management intervention; NHS, National Health Service.

Table 2 highlights selected verbatim quotes from survey responses.

Current Funding for Standard Optical Corrections for Myopia

Most participants reported that parents/carers or the government/public health system pay for standard glasses or contact lenses for CYP (n = 14, 58.3% and n = 13, 54.2%, respectively). Two pointed out that the NHS (National Health Service) pays for the sight test and a contribution toward standard glasses, but not contact lenses, under the General Ophthalmic Services (GOS) contract, which regulates optometry services provided by the NHS in England. Parents/carers can also choose to pay for additional options for glasses above those provided by a GOS voucher, but cannot use this voucher toward MMI. In one European country, healthcare insurance companies contribute to lenses for people with high myopia (more than −6 diopters); medicinal preparations, such as atropine eyedrops, are fully re-imbursed.

Two participants advised that private health insurances may cover the cost of optical corrections. In Canada, arrangements for public health funding vary between provinces, and private insurances also cover glasses.

Current Funding for MMI

At present, MMI are overwhelmingly funded by parents/carers, as reported by n = 20 (83.3%) of respondents. Health insurances covered MMI for 2 families (8.3%), and the public health system for 3 (16.7%).

Barriers to MMI Funding by Public Health Systems and Private Insurers

Barriers to public or insurance-funding identified in the survey fell into 3 themes: financial barriers, lack of awareness of myopia and impact/cost of late complications, and lack of long-term evidence on effectiveness and impact of MMI.

Financial barriers may include the absolute cost of MMI for CYP, particularly as they need to be used over several years, lack of healthcare funding in general and for prevention in particular, and eye care not being of high priority within the NHS and research funding strategies.

Lack of awareness of myopia and associated complications, such as early cataract, optic nerve damage, MMD, retinal detachment, all of which can cause significant visual loss and significant costs to the healthcare system, were listed as additional barriers, resulting in myopia not being considered as an important issue/priority. Similarly, it was felt that there was a lack of awareness of MMI being available, or that some may not have confidence in the scientific evidence about their effectiveness. Another barrier may be the misperception that correction of visual acuity by standard glasses is an adequate solution to myopia, as it normalizes visual function.

In terms of long-term scientific evidence, respondents mentioned that as MMI have only been tested in medium-term clinical trials.

There may be concerns about their long-term effectiveness and impact on myopia-associated complications. The lack of data on how common these sight-threatening complications are in the United Kingdom was also listed as a barrier to implementing measures to slow down myopia progression.

Importance of Delaying Myopia Onset and Slowing Down Progression in CYP

Four themes emerged as rationale for myopia management, including behavioral advice and interventions: complications and sight loss in later life, impact of myopia on children, cost of myopia correction to affected people, and reduction of costs for health and social care related to late complications.

For the person with myopia, having a less severe degree of myopia when reaching adulthood equates to a reduction of the risk for suffering serious complications and sight loss in later life. Specifically named were the debilitating effects of MMD, choroidal neovascularisation, and degenerative myopia.

Even in childhood, myopia impacts on daily activities, such as participation in sports. Participants stated that children should have as normal life as possible, without the restrictions that poor sight can bring. In addition, it may affect their emotional wellbeing, as children may become anxious and reluctant to engage in activities, and may worry about myopia progression and becoming more and more dependent on glasses and contact lenses. High levels of myopia may not be corrected well with standard glasses or contact lenses and may require less convenient options than those available to people with lower degrees of myopia. Having a lower final degree of myopia may preserve quality of life, as they would be less dependent on glasses and may even increase access to jobs in the future, as some roles would be given to people with high myopia.

The provision of MMI may be cost-effective even in childhood and adolescence, as slowing progression may lead to longer intervals before a stronger correction is needed. Optical corrections for high myopia may be more expensive, and some adults may opt to undergo invasive and expensive surgical or laser procedures.

Lastly, reducing the number of adults affected by myopia-associated complications may reduce the burden on health and social care systems in the future.

Advocates and allies, decision-makers who could be targeted by a myopia advocacy campaign, specific activities to raise awareness, and individuals/groups/channels to spread the word are summarized in Figure 2. They include eye care professionals, educators, families, and decision-makers on funding, such as the National Institute for Health and Care Excellence, Integrated Care Boards, and private healthcare insurance companies.

Figure 2.

Blueprint for UK myopia advocacy campaign, identifying key stakeholders and activities. Central panel after⁶; details at top and bottom summarize responses to the survey reported in this article. Increasing awareness of myopia and its impact on eye health should target eye- and healthcare professionals, educators, and families as well as health policy and funding decision-makers. Those affected could raise awareness by using multiple channels and lobbying activities.

The Ideal Outcomes of a Myopia Advocacy Campaign

Three themes emerged on changes that a myopia advocacy campaign could bring about: raised awareness, funding for MMI and more research into myopia, and a reduction in the number of people with myopia and those affected by sight-threatening late complications of myopia.

Comments about raised awareness included awareness of the impact myopia can have on vision and quality of life, of lifestyle and behavioral factors (time outdoors, time on near-vision-work), of signs of short-sightedness and importance of regular eye tests for children to make an early diagnosis, of MMI and their effectiveness, and calls for a commitment for optometrists and dispensing opticians to provide information to families, and myopia becoming a common topic of discussion. Lastly, myopia should be recognized as an important and preventable illness, rather than “an eye condition that can be treated with glasses.”

Funding for MMI by the NHS, so they can be prescribed under the GOS contract, would improve access for families. Exemption from value-added-tax, similar to a recent exemption given to menstrual period products, would at least make MMI more affordable. Increased funding for myopia research would allow the development of new methods to reduce its impact.

A reduction in the number of people who develop myopia and those who suffer myopia-associated complications later in life could be monitored by a central register of children receiving myopia care and by including data on myopia in national NHS audits.

Resources Needed for a Myopia Advocacy Campaign, and Who Could Provide Them

Resources required include money, volunteers, supplies, equipment and building space, with money and volunteers identified as most relevant. Knowledge in advertising, technology, and marketing was identified as necessary skill, and seeking support from key organizations and regional centers of excellence was suggested.

Organizations suggested as potential providers of these resources included government departments (Department of Health and Social Care, UK Health Security Agency, Department for Education), charities, particularly those with focus on vision and sight loss/blindness, and community-based fundraising organizations such as Lions and Rotary clubs, private fundraising, NHS providers (primary care and hospital trusts, clinical commissioning groups), private healthcare insurance companies, Local Authorities, Healthcare insurance companies, pharmaceutical, medical device and other companies, including manufacturers of MMI, research organizations and professional bodies.

Visualization of Change

Based on the 3 “ideal outcome” themes of a myopia advocacy campaign, members of Moorfields’ eye-YPAG developed suggestions for campaign visuals (Figure 3). Key messages were: “Let's talk about myopia” and “Take me for a free eye test” (raising awareness), and “Protect my eyesight—Free myopia interventions for children and young people, and Let's organise more myopia research” (funding for MMI and myopia research). The young people used bold letters as used in graffiti and bright colors to attract attention to the messages. One proposed a gentle cartoon superhero character, “R”, to rescue eyeballs from becoming too long by organizing more research. Others used their lived experience of eye care to show for children having eye tests, wearing glasses and having eye drops.

Figure 3.

Visualization(s) of possible outcomes of and messages for myopia advocacy campaign. Key messages were: “Let's talk about myopia” and “Take me for a free eye test” (raising awareness), and “Protect my eyesight—Free myopia interventions for children and young people, and let's organize more myopia research.”. Moorfields Young People's Advisory Group for eye and vision research developed visuals based on the “ideal outcome” themes identified in this study. The young people used bold letters as used in graffiti and bright colors to attract attention to the messages. One proposed a gentle cartoon superhero character, “R,” to rescue eyeballs from becoming too long by organizing more research. Others used their lived experience of eye care to show for children having eye tests, wearing glasses and having eye drops.

Discussion

This work aimed to outline why myopia advocacy is important (issue identification), and to explore and analyze stakeholder views and previous myopia/eye health advocacy campaigns (research/analysis). Our key findings are that the most important rationales for eye-healthy behavior and new treatments are short/medium improvements in quality of life for children linked to lower levels of short-sightedness, and long-term reduction of the risk of sight-threatening complications in later life and costs to individuals with myopia and society. The main barriers we identified are cost of MMI, lack of awareness of myopia and the impact and cost of associated complications, and lack of long-term evidence on effectiveness and impact of MMI. A myopia advocacy campaign should increase public and professional awareness of myopia, associated complications and available MMI, provide education and information for ECP/HCP, families, teachers and other professionals, lead to public funding for MMI, and promote collaborations between different stakeholders to improve access to MMI.

Limitations

We searched only one database for the literature review, PubMed. This may be a limitation, but this database indexes most sources relevant to our topic.

Internal validity: The inclusion of a convenience sample of stakeholders is a limitation, though we aimed to include a broad range of people with lived experience of myopia and associated complications, ECP and representatives of decision-making organizations in this field. The high survey response rate of over 80%, and the fact that saturation was reached within the responses given, would support the validity of our findings. However, as with any convenience sample, there is a possibility of selection bias. Interaction between participants may also be a source of bias, as participants may be known to each other, for example adults with myopic macular degeneration may know others with the same condition, members of the same family may have responded to the survey, or eye-care professionals may know each other. However, we invited a broad range of stakeholders, and the survey was completed online and individually, reducing the risk of contamination.

External validity: As our survey respondents came from diverse stakeholder backgrounds, including young people, parents/carers, adults with severe myopia, eye care professionals, industry partners and members of decision-making organizations, our findings are generalizable to the wider population of myopia stakeholders. Our findings are consistent with previous reports in the literature: previous publications on myopia advocacy report findings similar to ours, particularly with regard to limited awareness of myopia management options in ECP/HCP and the general public.^8-10 The impact of awareness campaigns on optometrists’ attitudes and practice patterns is successfully monitored in global surveys, which could demonstrate the impact of future campaigns.¹¹ Reports on successful myopia advocacy campaigns identify government/public health and educators as important stakeholders in effecting change.^12-17 At the same time, messages directed at CYP and families, that is, the end-users, are equally important, as they can then raise the topic of MMI in consultations with ECP/HCP.^12,18,19 In addition to the frequently discussed impact of overuse of mobile phones on adolescent physical and mental health, myopia should be added to the list of detrimental conditions which are linked to extended periods of screentime, such as for the use of social media. While primary-school age children may successfully be reached in classroom settings,²⁰ for older young people, parents/carers and professionals social media may provide new routes of providing information and education.^12,21-24 At present, PAGs have a far stronger social media presence than professional organizations, peer-reviewed journals, and trade publications.²⁵

Future work on a myopia advocacy campaign should include more representative stakeholder samples to ensure that all views and experiences are included; this should include contributors from other countries.

As the utilized questionnaire was fully anonymous, did not collect personal or identifiable data, did not involve linking data or generating identifiable information, and did not pose a risk of disclosure or reporting obligations, ethical approval was not required, but best practice would be to seek local ethical reviews for any survey of this kind. Participants were not under any duress, and were informed of the intention to use their anonymous responses to publicly raise the topic of myopia awareness and to develop a myopia campaign. Providing a response was considered an implicit expression of consent. However, this approach limited the collection of demographic data, which would have enriched our data. Future studies to plan, action, and evaluate the myopia advocacy campaign, i.e. the next steps in the advocacy cycle,⁶ should seek ethical approval to collect demographic as well as topic data. Evaluation.

Conclusions

In countries with high prevalence of myopia in children, myopia advocacy campaigns have had demonstrable impact in terms of delaying the onset/lowering myopia prevalence.^12,14,15,17 This would justify channeling resources toward myopia campaigns to increase awareness and promote eye-healthy behavior, and toward the implementation of MMI.

Supplemental Material

sj-docx-1-jpx-10.1177_23743735251323355 - Supplemental material for Let's Talk About Myopia: Literature Review and Stakeholder Survey to Develop a Roadmap for Advocacy

Supplemental material, sj-docx-1-jpx-10.1177_23743735251323355 for Let's Talk About Myopia: Literature Review and Stakeholder Survey to Develop a Roadmap for Advocacy by Annegret Dahlmann-Noor and Hamza Noor in Journal of Patient Experience

Supplemental Material

sj-docx-2-jpx-10.1177_23743735251323355 - Supplemental material for Let's Talk About Myopia: Literature Review and Stakeholder Survey to Develop a Roadmap for Advocacy

Supplemental material, sj-docx-2-jpx-10.1177_23743735251323355 for Let's Talk About Myopia: Literature Review and Stakeholder Survey to Develop a Roadmap for Advocacy by Annegret Dahlmann-Noor and Hamza Noor in Journal of Patient Experience

Supplemental Material

sj-docx-3-jpx-10.1177_23743735251323355 - Supplemental material for Let's Talk About Myopia: Literature Review and Stakeholder Survey to Develop a Roadmap for Advocacy

Supplemental material, sj-docx-3-jpx-10.1177_23743735251323355 for Let's Talk About Myopia: Literature Review and Stakeholder Survey to Develop a Roadmap for Advocacy by Annegret Dahlmann-Noor and Hamza Noor in Journal of Patient Experience

Footnotes

Acknowledgments

We thank all stakeholders who discussed the project with us and those who completed the survey. Special thanks go to the members of the NIHR Young Persons’ Advisory Group for eye and vision research (eye-YPAG) who dedicated one of their sessions to discussing myopia advocacy approaches and sketching visuals that could be used in an advocacy campaign.

Author Contributions

ADN and HN developed the concept for this work, carried out the literature review, designed and carried out and analyzed the survey. ADN drafted the manuscript, which was then reviewed by HN. Both authors reviewed the final manuscript.

Availability of Data and Material (Data Transparency)

The data underlying this article will be shared on reasonable request to the corresponding author.

Declaration of Conflicting Interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: ADN has contributed to educational events and advisory boards for Santen, Thea, CooperVision, SightGlass Vision, Novartis, Zeiss. HN has no interests to declare.

Funding

This work did not receive funding. A-DN is supported by the NIHR Moorfields Biomedical Research Centre. Moorfields’ eye-YPAG is supported by Moorfields Eye Charity.

Ethics Approval and Consent to Participate

The aim of this work was to seek public and patient input into the project question, using a survey as a method of involvement and engagement. As the utilized questionnaire was fully anonymously, did not collect personal or identifiable data, did not involve linking data or generating identifiable information, and did not pose a risk of disclosure or reporting obligations, ethical approval and consent to participate were not required.

ORCID iD

Annegret Dahlmann-Noor

Supplemental Material

Supplemental material for this article is available online.

Author Biographies

Annegret Dahlmann-Noor is consultant in children's eye health; her research focuses on development and implementation of interventions to slow myopia progression in children and young people.

Hamza Noor studies business management and marketing; his research focuses on consumer surveys, including the voices of young people.

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Supplementary Material

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