Introduction
Dry eye disease (DED) is a common ocular surface disease characterized by tear instability and often visual disturbance with a global prevalence of 11.6% [
1] and the prevalence increases significantly with age [
1]. According to Tearfilm and Ocular Surface Society Dry Eye Workshop (TFOS DEWS) II: “Dry eye is a multifactorial disease of the ocular surface characterized by loss of tear film homeostasis and accompanied by ocular symptoms in which tear film instability and hyperosmolarity, ocular surface inflammation and damage, and neurosensory abnormalities play an etiological role.”.
The common irritative eye symptoms in DED are dryness, redness, foreign body sensation, feeling of heaviness, pain, light sensitivity, discharge, itching and eye fatigue. In addition, some patients may suffer from visual disturbances due to tear instability. There may be diurnal variation in dry eye symptoms. For example, DED symptoms due to lack of aqueous tears tend to become more pronounced later in the day, compared to DED arising from lipid deficiency, which may manifest early in the day [
3]. There are systemic conditions, including Sjögren’s syndrome, that are associated with severe DED [
4].
Contributing factors to DED include prolonged use of computer or digital devices, sleep disorders, anxiety, and depression [
5‐
8]. One underlying cause of DED is Sjögren’s syndrome (primary or secondary), which is an autoimmune condition characterized by damage to the body’s exocrine glands, including the tear-producing glands [
9].
DED greatly affects the patient’s life through daily activities such as driving, reading, and using digital screens [
10]. In addition, untreated and neglected DED leads to serious complications (eye inflammation, corneal ulcers, and vision loss) that become more difficult to treat over time [
11].
Eye professionals should treat DED holistically. Artificial tears and lifestyle modification are the first treatment for DED, acting by reducing tear osmolarity and diluting inflammatory cytokines on the ocular surface, reducing the ocular surface’s susceptibility to inflammation [
12]. In more severe cases, a combination of measures such as lacrimal punctal plugs, anti-inflammatory drugs, secretagogues, and serum-derived products is used [
3,
8‐
10]. A recurring challenge in the care of DED is the fragmentation of care, with patients having strong preferences for specialist care providers, and the consequent imbalance in care capacity resulting in unmet patient needs [
10].
Because of the fragmented nature of care and impact of DED on quality of life, we aimed to elicit a DED patient’s experiences in the voice of a patient, to explain the context and implications of these patient experiences, and to provide a systems thinking perspective on the dynamics that affect the patient’s quality of life. For the latter, we will use a logic map, in the form of causal loop diagram (CLD), a systems thinking tool that is widely used in qualitative system dynamics analysis. A central tenet of systems thinking, as explained by Donella Meadows[
13] and others, is that systemic structure drives patterns of behavior, which result in events. Uncovering systemic structure enables a deeper understanding of a problem. A CLD is a sketch that expresses systemic structure in terms of “how the system variables interrelate and how external variables impact them.” [
14]. CLDs have found wide use in health systems including their ability to capture structural aspects of care in obesity and COVID-19 infection [
15‐
17].
A Patient’s Perspective on Dry Eye
‘Having been diagnosed with Sjögren’s syndrome in the early 1990s, one of the key irritants of this ailment of mine is “dry eyes”. But my eyes are not “dry” – I can cry and I tear! This is the oddest symptom – dry eye sufferers often have a lot of “tearing” and “tearing” abates after a routine generous application of artificial tears from a bottle, which I can get at the pharmacy.’
This is a common problem encountered by many patients. Some patients with aqueous deficiency DED are unable to form tears. Yet, patients who report watery eyes or irritation resulting in teary eyes are by far more typical [
19]. In fact, some years ago, several experts have suggested renaming DED as “dysfunctional tear syndrome.” This term is a more accurate scientific description of the entity encountered. Deficiency or abnormality in one or more tear components is encountered in DED, leading to dysfunctional tear fluid [
20]. Even in greater quantities, the abnormal tear fluid is unable to shield the ocular surface or ensure aberration-free vision [
21]. However, the consensus seems to favor the use of the older term ‘dry eye’ because more people are familiar with it. If a less familiar term is introduced, many patients may not know that it is the same disease as ‘dry eye.’
To manage DED effectively, we should focus on understanding the symptomatology of patients. In my practice, I have encountered patients who become angry and truculent once they heard the term ‘dry eyes’ because their eyes do not feel “dry.” Through education and a better understanding of this condition, patients will less likely question the diagnosis of ‘dry eye’ when they are presented with something ‘counter-intuitive’, for example, with watery eyes. The abnormal ocular surface in a patient with dry eye could result in reflex tearing [
22].
We have also published cases of post-operative dry eye that presented mainly with increased intermittent blurring of vision without an increase in irritative symptoms or watery eye [
23]. This suggests that patient education should also focus on visual and refractive problems. I have encountered dry eye patients who reported difficulty obtaining an accurate subjective refraction, resulting in glasses with suboptimal refractive correction and failure to achieve satisfactory visual acuity for daily activities.
‘Dry eyes for me often presents itself with a sandy, gritty feeling as if something is poking my eyes or something is in my eye. Usually, there is nothing, and these conditions are alleviated with the application of artificial tears.’
This sandy, gritty feeling is one precipitating factor for some dry eye patients initially consulting the ophthalmologist. In such patients, it is critical to examine the eyelashes and eyelids carefully, and everting the lids to check for any abnormalities such as concretions and foreign bodies. I have previously encountered a patient in which an exposed suture located deep in the superior fornix from a past eyelid/orbital procedure resulted in irritation and “grittiness.”
Nevertheless, no actual foreign bodies are found in the majority of cases of DED. One differential in cases of blink-related irritation is lid wiper epitheliopathy, related to frictional damage of the upper eyelid tarsus against the cornea epithelium [
24]. I’ve also found that allergic conjunctivitis, or just follicular conjunctivitis, occurs commonly in dry eye with or without concomitant meibomian gland dysfunction (MGD), resulting in increased irritation and higher symptomatic scores [
25].
‘Dry eyes also gives me eye fatigue, which leads to pain in the eyeball. You can literally press on the eyeball and feel the pain. The trick to overcome this is to massage the eyelids and apply artificial tears to reduce this symptom.’
Eye or visual fatigue can have different meanings in varying contexts, and these terms should probably be avoided when discussiing dry eye. However, the feeling of tiredness in the eyes, especially towards the end of the day, is very common in DED.
Follicles and concretions in the tarsal conjunctiva and lid wiper defects can result in friction to the cornea during blinks, leading to pain. Chronic MGD could cause eyelid scarring and deformity, which exacerbates mechanical issues during blinking [
24].
Gentle massage of the eyelids may help the expression and delivery of meibum to the tear film, which augments the lipid tear layer and partially alleviates friction between the eyelid and cornea. Massaging could also induce reflex tearing, which leads to increased overall tear volume and lubrication [
26].
In contrast to eyelid massage, rubbing the eyeball should be discouraged. First, this may potentially increase astigmatism and keratoconus. Secondly, rubbing the eyes may worsen conjunctivochalasis and induce bursting of mast cells [
27]. Increased conjunctivochalasis results in poor tear dynamics or tear spreading, and may even worsen epiphora or watery eye [
28]. Bursting of mast cells releases mediators that induce an acute allergic inflammatory response, which may induce further ocular surface irritation [
29,
30].
‘Recently, I noticed that my eyelids have become thinner and flaky, and I think this is also caused by dry skin or my skin is reacting to the quantity of long-term usage of artificial tears, which contain some preservatives and is affecting the lids.’
Dermatological problems such as eczema are extremely common in dry eye patients. An excessive amount of eyedrop retention on the surface of the eyelid skin might occasionally induce contact dermatitis with scaly changes. Some of the eyelid margin issues may be related to blepharitis and mite infestation. Patients with flaky skin and excessive scurf are more likely to have occluded meibomian glands. This creates a cycle of MGD and secondary skin inflammation once the body’s immune system becomes sensitized to the meibum [
31].
Eyedrops containing preservatives are best avoided when frequent instillation is required [
32]. The primary role of preservatives is to maintain the sterility of the eye drops. However, with the availability of cost-effective, bottled multi-dose preservative-free eyedrops, the new formulations could avoid microbial contamination without using preservatives [
33].
‘Sjögren’s syndrome causes dryness – dry mouth, dry throat, dry eyes, dry skin, eczema amongst others and it does not help me as I also have multiple drug allergies which exclude a fair bit of drugs that others may use and I cannot.’
We have encountered several dry eye patients with multiple drug allergies. In some patients, the ‘allergy’ extends to sensitivity to anti-glaucoma eye drops, preservatives in eyedrops, or even sinus mucosal irritants. Rarely, these patients may have a severe drug reaction from Stevens–Johnson syndrome, which is a genetically based idiosyncratic response to drugs leading to cicatrizing or scarring conjunctivitis [
34,
35].
In MGD, the retained lipids in the meibomian glands undergo changes and become more viscous. These lipids may also induce hypersensitive reactions, leading to a form of chronic ‘allergy.’ Patients who use cosmetics or are exposed to environmental pollutants have a higher risk of MGD and low-grade ocular surface inflammation [
36,
37], culminating in dry eye and allergic conjunctivitis [
25].
‘A lot of my work requires me to work on a laptop. Due to the sensitive nature of my profession, I am unable to use large-screen monitors as in today’s post-COVID-19 situation. My office is configured on shared office space without permanent seats or work stations. I work in a nomadic fashion. With eyes constantly peeled on the smallish laptop screen, my eyes get drier easily and more tired. I try to get up from my seat and walk to the windows to exercise my eyes by looking at things in the distance.
It is also very difficult for me to find the right optician to test my eyes and present me with a decent pair of prescribed lenses for my spectacles. Thus far, generic optical shops that people can go to, do not work for me. I have made four pairs of spectacles with prescribed lenses but it does not seem to correct my vision.
What I realized was that when my eyes are drier on the day I do eye tests, then the lenses prescribed on that day will fail to work for me. So it is never a perfect fit. Even stranger is that sometimes, I do not need to use spectacles to read or drive. Frankly, to begin with, I have one great eye for distance and the other great eye for reading. Basically, I do not need spectacles but because of my dry eyes, my eyesight gets wonky now and then.’
Indeed, DED poses a challenge to modern lifestyle in various ways [
38]. Refractive problems are underappreciated in DED. Because of tear instability, highly dynamic optical aberrations occur in such patients [
39]. Some patients find it difficult to obtain an accurate refraction after cataract surgery, even if they do not exhibit the irritative symptoms [
23]. Optimization of the ocular surface and tear film prior to invasive ophthalmic surgery is therefore crucial [
40]. Failure to optimize vision will inevitably lead to further loss of visual function and affect daily activities such as driving, reducing quality of life [
41‐
43].
‘Hobbies are limited to my voluntary social work and taking care of my elderly parents. I need to wear sunglasses to shield me from the sunlight, as I find myself rather photosensitive, and home light fittings are usually warm white and not pure white, as it “hurts” my eyes.’
Photophobia is another underappreciated symptom in dry eye [
44].
‘To me, dry eyes is something I have to live with and overcome with whatever is available to relieve my condition. It is chronic. It can be debilitating, especially if I am not strong mentally to face it squarely and tell myself that I will live, albeit with inconveniences. But hey, compared to the physically challenged, this is not that grave. I tell myself, be strong! It will be alright.’
This optimistic outlook is unfortunately not achieved by many other patients. The comorbidities of DED often make coping with the condition difficult [
43]. If management is solely from an ophthalmic perspective, these comorbidities may not be properly addressed.
‘As a patient, I feel that education is key.’
With increasing emphasis on preventive and holistic care [
45], more resources should be directed to education, specifically for both patients and caregivers. Increased use of media and technology, such as demonstrative videos, would aid information delivery. Repetition of key points, especially the frequent use of lubricants and warm compress, would increase patient knowledge and compliance. A review on lifestyle challenges and comorbidities has been recently published [
38]. Furthermore, the formation of patient groups for the sharing of personal experiences would empower patients, facilitate communication, and encourage knowledge sharing. At the same time, industry stakeholders such as pharmaceutical and medical equipment companies have also expressed interest in contributing to counselling and education.
‘If each patient is armed with valid facts about their medical eye condition, is empowered to self-help and not left to the “ifs, so’s and what’s of doctors that frequently change as they desperately seek answers – it would really help.’
A busy day-care surgical center is not designed to handle chronic diseases such as dry eye [
46]. Key contributing factors include the lack of time and the large patient population, many of which only have mild dry eye. It takes a long time to manage the predisposing factors and comorbidities of dry eye, which are multifactorial and difficult to explain in a brief clinic visit. Even with educational tools such as videos, internet sites, digital apps and illustrated brochures, we have found educating patients with DED and MGD in the specialist clinic a significant challenge.
If the primary care of mild DED can be redistributed and managed in the community by trained optometrists and general practitioners, hospital specialists can devote more resources to complex cases including autoimmune disease, cicatrizing conjunctivitis and patients with stem cell deficiency. Time-consuming explanations such as the technique of warm compress using an electrical-powered eye mask may be delegated to primary care to be more efficient, and use of eyelid warming may have concomitant benefit such as improvement of depression, which could be utilized by a primary care physician [
47‐
49]. Prevention and early treatment of MGD is desirable because it is the leading cause of symptoms in DED [
25].
Increased attention should be paid to inter-professional education. Many procedures for DED can be handled by nurses or health technicians. Certain procedures or consultations can also be performed at community sites or through telemedicine to increase accessibility of care [
50].
‘Financially, I am pleased that the government of Singapore, through the Ministry of Health provides affordable healthcare for me to continue my eye treatment, review, and checks at Singapore National Eye Center (SNEC) at a subsidized rate. I am by nature prudent and will not chase after a branded doctor in the private sector, as my pocket does not allow it, especially if it is a chronic condition. I am pleased with the medical care of SNEC as it provides practical and optimal care without segregation of class or society divide.’
We are glad that JA is satisfied with the care provided at the center. Dry eye can create a significant social-economic burden to a patient [
51]. The medical expenses of patients could be distressing in a healthcare system in which the routine dry eye tests are not subsidized, and major prescription medications are available only on a named-patient basis. Previous research has also highlighted that dry eye patients suffer from loss of work productivity [
52]. Moreover, in a large population study, severe dry eye symptoms or dry eye diagnosis were linked to reduced social support [
53,
54].
‘Both patients and doctors must work collaboratively and listen to each other to optimize medical care.’
Education on DED can empower patients and manage expectations of care. This will increase compliance with treatment and increase satisfaction with management. This collaboration is synergistic: patient engagement can have a greater and more impactful outcome on the community than the effort of clinicians alone [
55‐
58]. Comprehensive educational programs for patients, physicians, and the general public should be developed to raise awareness and understanding of DED.