Knowledge of DR and need for information on DR

From quantitative studies it has been found that patients with DR generally lack DR related knowledge,11 ,21 which is consistent with what we found in our interviews. Patient No 16 was a 26-year-old unmarried nurse at a township hospital and visited the doctor with her 60-year-old father. There was no history of DM in her family. She was found to have type 1 DM when she was 7 years old. When asked about how she viewed her DM complications, she said:“I did not know DR existed, and no one reminded me to undergo fundus examinations. I have looked up some knowledge on the complications of DM. However, I never thought that the complications would occur to my eyes; in my opinion, they generally occur to the heart and kidney, which affects one's life and must be attended to first. People may pay less attention to the eyes.”

This patient was a medical worker, had some DM related knowledge and the possibility of some occurrence of complications, but knew nothing about eye complications. This suggests that DR is not familiar to patients and is not taken as seriously as other life threatening complications. Additionally, this patient, as a medical worker, had no knowledge of DR, which indicates that local medical workers might also lack sufficient knowledge on DR. We also found in our interviews that most patients knew they should regularly have their blood sugar monitored but did not know the potential eye complications and the importance of regular fundus examinations. Of the 27 patients in our study, only one patient (patient No 9) explicitly mentioned that her doctor told her about DR and suggested that she should receive an eye examination annually when she was diagnosed with DM. This suggests the need for patients with DM to improve their DR related knowledge and for the awareness and importance of DR to be strengthened.

Because the patients lacked knowledge of DR and were unaware of the importance of periodic fundus examinations, they did not see their doctor when ocular symptoms occurred. They thought they may have been due to other common non-serious eye diseases, such as myopia or cataracts. For example, patient No 26, a university teacher in Guangdong, often needed to search for documents on the computer. He did not pay attention when his vision became blurry he as thought it was because he was too tired. The eyesight in one of his eyes worsened dramatically from 1.0 to 0.1 within 2 months. A 60-year-old patient (patient No 10) used a few eyedrops when his vision became cloudy. Later, his family thought it was a cataract and sent him to the hospital until his right eye deteriorated due to secondary glaucoma and he experienced headaches. A 32-year-old patient (patient No 11) thought that it was the progression of myopia that caused her blurred vision. Furthermore, three patients (patient Nos 2, 11 and 19) were first diagnosed with DM only after identifying the occurrence of serious PDR affecting their eyesight.

These patients manifested successive symptoms of DR, but their lack of knowledge and awareness of DR resulted in PDR diagnoses when they visited the hospital. This not only leads to treatment difficulties but also affects the prognosis of the disease. Therefore, patients were recommended to seek medical help when noticing blurred vision.

Fear, worry and misunderstanding about the use of insulin

Insulin is the most effective hypoglycaemic agent and is widely used in the treatment of patients with DM to reduce their long term complications. We found in our study that some patients had major concerns, or even misunderstood the use of insulin.

Patient No 27, a 60-year-old woman, demonstrated apparent fear when she gave her opinions on using insulin as a neighbour had died because of the frequent use of insulin.“There may be other reasons for this, but we still resist and dare not to use insulin”.

The patient connected the death of a neighbour with the use of insulin, and had a great misunderstanding of the use of insulin, which affected her adherence to insulin use, and led to PDR.

Patient No 26 refused to use insulin because of concerns about insulin dependence and only agreed to use insulin when his oral medicine had become completely ineffective. Now he thinks that his DR was mainly caused by the poor control of his blood sugar caused by the delay in the use of insulin.“If I had used insulin earlier, my DR may have been better”.

Patient No 2, a 71-year-old, farmer, was diagnosed with DM when she went to the hospital because her vision was blurred. She said,“the doctor suggested that I use insulin when my oral medicine could not control my blood sugar. I worry about insulin dependence too, but there is no other way”.

In addition, the patient worried about the inconvenience of insulin injections because she could not perform the injections on her own due to her poor eyesight.

The main concern regarding the use of insulin was fear of insulin dependence and its side effects. These cases indicate that lack of insulin related knowledge in some patients resulted in insulin use disorders or poor adherence. These concerns are likely to affect patients' use of insulin, resulting in poor control of blood sugar.22 Intensive therapy with insulin in patients with type 1 diabetes was associated with a substantial reduction in the long term risk of ocular surgery.23 Therefore, it is necessary for medical staff to help patients objectively understand this so that patients' unnecessary concerns can be reduced and adherence can be improved, achieving appropriate control of blood sugar, and thereby reducing the occurrence and development of PDR.

Interactions between patients and society involve the complexities of emotion and social culture, presenting a double-edged sword

As part of social cultures, social relationships can directly affect people's lifestyles and psychological states. Social relationships consist of many types. Family relationships, working relationships and fellow patients’ relationships were mentioned most often by patients during the interviews. The influence of these relationships on the development of disease had two sides.

Patient No 7, a 57-year-old man, enjoyed eating and drinking with friends in teahouses. His family began to supervise his life and diet after he was diagnosed with PDR. His wife (57 years old) told us“He used to eat sweets and fats. Now I do not allow him to eat these foods. If a man is not good, the whole family worries about him”.

She always reminded her husband to control his diet. This case is an example of the positive influence of family support in the treatment of disease.

The mother of patient No 16, the only patient with type 1 DM, stopped working and took care of patient No 16. The mother reduced the consumption of starchy foods, provided a reasonable mix of meat and vegetables, and increased the quantity of vegetables when taking care of her daughter's diet. The mother looked at many types of folk prescriptions to cure her daughter, including many Chinese herbal medicines which sometimes caused vomiting. The patient said that her mother's actions were useless, even foolish. However, she continued to try what her mother suggested as she understood that her mother was trying to cure her. This case provides an example of the complexity of family relationships and interactions. Such excessive family care may cause a psychological burden.

Patient No 2, a 71-year-old woman, lived in the countryside with her husband. Every time the children returned home, she was busy taking care of them and enjoyed the rare family gatherings. She reluctantly talked about her DM, even when asked by her children. She said,“I can endure it as long as it is not too severe. I do not want to affect my children's work and life”.

With the extension of the average lifespan and low birth rate, China has become an ageing society. Patient No 2's family represents an example of a lonely elderly family, which is very common. With this type of family structure, the children work outside throughout the year, cannot take good care of their sick parents and often cannot take their parents to hospital in time for examinations and treatment when an illness develops. Simultaneously, the elderly parents are unwilling to trouble their children and become too much of a burden. Therefore, this type of family interaction may delay the treatment of DM/DR, leading to worsening illnesses.

In addition, some patients often have to engage in social activities because of work, especially if they are men. Some patients are unwilling to tell others about their illness and even“fear that others know they suffer from the disease” (patient No 25).

Patient No 4, a 52-year-old salesman, often engaged in social activities.“Once, I was drunk and taken to the hospital. At that time, no one knew that I had DM, and the doctor transfused glucose. I felt more and more uncomfortable and almost lost my life”.

After the ‘death’ experience, patient No 4 no longer concealed his illness, and discovered that his friends understood and considered his lifestyle and diet. This was a great comfort and source of encouragement for him. As a factor, the complexity of social relationships can affect the progress of the disease.

When a person becomes sick, his social relations will expand to his group of fellow patients with the same diseases. Sometimes, the influence of fellow patients is not inferior to that of the family, but it is often overlooked. Patient No 8 initially needed to receive four laser treatment sessions according to his doctor's suggestion, but only one treatment was completed. He decided not to accept the remaining three laser treatment sessions after hearing his fellow patients mention that his eyesight would become worsen. Patient No 21, a businessman, felt thirsty and hungry and lost a substantial amount of weight over 10 years. His friend with DM said that he might have DM and gave him some medicine. Since then, he had been taking the medicine that his friend gave him and had not gone to the hospital for many years. These patients listened to the suggestions of their fellow patients, and missed or delayed their treatment. This suggests a lack of trust between patients and doctors.

Interactions between patients and society involve the influences of emotion and social culture, including all types of social relationships. These influences can be positive or negative. Although people often overlook them, these factors greatly influence the attitudes of patients with DR towards treatment and are sometimes key factor influencing the patient's treatment decision.

Economic burden of DM and DR treatment

As a chronic disease, people with DM need lifelong medication. In our interviews, most patients had medical insurance but the reimbursement ratios were different by region, and therefore patients reported financial burdens of treating DM, in particular the costs of surgery for treating PDR.

Patient No 10, a 60-year-old woman, was a primary schoolteacher in the town of Guangxi before retirement. She could receive a higher reimbursement ratio if she accepted treatment locally. However, she had to bear all of the treatment costs if she accepted PDR treatment in Guangzhou. Patient No 10's son said,“a lot of people in our hometown have DM, some have swollen feet and blind eyes, but they are not treated because they cannot afford it. Eventually, they end up not seeing a doctor”.

Patient No 5, a 51-year-old woman , had DM for 16 years and was living in the countryside. She said that she could not work after she was diagnosed with DM, and her source of income was her husband's small salary.“For economic reasons, I take cheaper drugs, buy some when we have money, and do not take them when we do not have money”.

She also said that farmers in her hometown had rural medical insurance but had to apply for special outpatient reimbursement. Their insurance could reimburse about RMB 100 a month. However, most drug costs and surgery costs could not be reimbursed.

Patient No 14, a 52-year-old driver, was unemployed due to his poor eyesight. In the beginning, when his right eye first became blind, he thought that“one eye can see, and it doesn't matter if I provide self-care”.

He thought that there were parents and children at home who needed to be taken care of, and he was the main source of income for his family. He did not go to the hospital for treatment until both of his eyes became blind.“It is a burden for my family. We don't have money and borrowed it from others”.

These cases reflect the influence of economic status on patients' behaviour in terms of seeking medical advice. Their illnesses become severe as a result of the delay in treatment for economic reasons. The efficacy and cost effectiveness of early detection and treatment of DR are well established.24 It is necessary to emphasise the importance of early detection and treatment.