Table 2.

Shared themes among patients, caregivers and ophthalmologists: quotes from narratives

DED physical impact	‘Before, I had never felt any issues with my eyes, I wasn’t even aware of them. There were no warning signs; it all happened suddenly one morning when I woke up. The night before, everything was fine… But that morning, I felt something strange in my eyes, a new sensation of heaviness and discomfort. My days were marked by discomfort, pain, burning, sensitivity to light and blurry vision, especially in the evenings. At home, I used various eye drops several times a day. I was bothered by the kitchen light during dinner and by the TV light in the evenings. I tried to explain my symptoms to others, but unless you experience them yourself, it’s hard to understand, like with all illnesses.’ (P008) ‘Mom complained about some eye discomfort, especially feeling like there was a foreign body inside, like having sand in her eyes, causing a lot of irritation and burning sensation, accompanied by headaches.’ (C014) ‘The patient told me she had always experienced some discomfort in her eyes since she was a child, around the time she was diagnosed with atopic dermatitis, a condition known to also cause alterations in the eye surface. However, for about a year, the eye discomfort intensified to become a real issue, especially when she went out during autumn–winter with cold air, which triggered uncontrollable tearing. As she wiped and rubbed her eyes, they became red, irritated, with a persistent sensation of a foreign body. Even though it didn’t happen all the time, the patient said she truly couldn’t bear this discomfort anymore, and it even embarrassed her because the eye makeup often didn’t hold up, resulting in what she described as terrible outcomes.’ (PC035)
Daily use of eye drops	‘I wake up early in the morning. I wash my face, but most importantly, I use cotton pads soaked in warm water to clean my eyes. I put a few drops of cortisone eye drops on the inside of the lower eyelids and, after an hour, I use a state-of-the-art eye drop for treating dry eyes. Throughout the day now, I go about my activities regularly, often using lubricating eye drops for relief. In the evening, when I return home, I dedicate almost an hour to eye care, using warm compresses for twenty minutes, an eye mask for ten minutes and cotton pads soaked in warm water to remove any remaining debris for another ten minutes. Before going to sleep, I apply a few drops of cortisone eye drops on the inside of the lower eyelids (like the morning routine). Thanks to the consistency of these measures, I have gradually resumed applying makeup, using specific natural, anti-allergic eyeshadows.’ (P015) ‘Her days were marked by schedules for instilling eye drops, which provided her with some minimal relief.’ (C002) ‘I started her on tear substitutes until we found the right one for her, together with steroid eye drops in varying dosages.’ (PC071)
DED emotional and social impact	‘At first, they didn’t understand at home. Then they tried to be as supportive as they could. I couldn’t carry out normal daily activities anymore, so my children and my mother helped me. My partner, with whom I had been for eight years, started becoming impatient and angry with me. He said it was all dependent on me, that I shouldn’t dwell on it and that I should go out and try. He was bothered that he had to accompany me to appointments and that we were no longer socially active. Eventually, out of desperation, I ended this relationship, as it was only worsening my psychological condition.’ (P019) ‘At first, she was calm because the discomfort was minimal, but as the problem worsened, she began to complain and sometimes felt demoralised.’ (C032) ‘Her life had changed enormously; she had started avoiding going out with friends because she felt uncomfortable in crowded places.’ (PC042)
DED economic and work impact	‘I want my treatment to be reimbursed by the national health system. Sjögren’s syndrome patients have a constant need for eye lubrication, unfortunately eye drops are very expensive and not everyone can afford it.’ (P068) ‘She was heavily restricted in her activities. I noticed she struggled to use the computer and read books, and she no longer felt confident driving at night. With the arrival of the pandemic, she had to teach her students in front of a screen, and I returned home from the place where I was studying to help her with her computer-related tasks. Moreover, she avoided going out, especially on windy days. Over time, she began delegating all tasks to me.’ (C015) ‘She had recently become a widow and was forced to support herself by working long hours on the computer. However, she could no longer do so, affecting her ability to provide for herself.’ (PC048)
Importance of care relationship	‘I was lucky to be followed by competent specialists who understand me emotionally and support me medically.’ (P096) ‘Doctors are crucial not only for the treatments but also for the information and explanations they provide for these kinds of issues.’ (C036) ‘I dedicated a lot of myself to this person. A friendship developed, and above all, trust. Thanks to this trust, even the ocular therapy worked.’ (PC046)

DED dry eye disease, C caregiver, P patient, PC parallel chart