Among the 13 patients interviewed (12 males and 1 female), 2 patients had asymptomatic hyperuricemia and 10 patients had hyperuricemia with symptoms of gout. The age of the participants ranged from 33 to 53 years old (the mean age was 42 years old). All of the 13 patients had a college education or above. All of the participants were married, and 1 had experienced the death of a spouse. 1 people had a monthly family income less than 1000 RMB, 2 people had a monthly family income of 1000 ~ 1999 RMB, 4 person had a monthly family income of 2000 ~ 2999 RMB, and 6 person had a monthly family income of more than 3000 RMB. Location of first gout attack(patients with gout): 7 patients had toes (including 4 left first toe fingers, 2 right first toe fingers, and 1 left ring finger), 2 patients had dorsal foot and 2 patients had ankles. Acute attack in the last one year: Except for 2 patients without acute attack, all the other patients had attack. Complications: 10 patients with hyperlipidemia, 7 patients had hypertension, 2 patients had kidney stones, 2 patients had thyroid disease.(Table 2).
Table 2
Characteristics of participants
| Characteristics | | Number |
| Gender | | |
| male | | 12 |
| female | | 1 |
| Age | | |
| 20–29 | | 2 |
| 30–39 | | 4 |
| 40–49 | | 4 |
| ≥50 | | 3 |
| Educational level | | |
| university | | 10 |
| graduate | | 3 |
| Marital status | | |
| married | | 12 |
| unmarried | | 0 |
| Death of a spouse | | 1 |
| Monthly family income | | |
| ༜1000 RMB | | 1 |
| 1000–1999 RMB | | 2 |
| 2000–2999 RMB | | 4 |
| ≥3000 | | 6 |
| Disease stage | | |
| asymptomatic hyperuricemia | | 2 |
| gout | | 11 |
| Location of first gout attack* | | |
| toes | | 7 |
| dorsal foot | | 2 |
| ankles | | 2 |
| Complications** | | |
| hyperlipidemia | | 10 |
| hypertension | | 7 |
| kidney stones | | 2 |
| thyroid disease | | 2 |
| *:The patients who had gout |
| **:Some patients had 2 complications, such as both hyperlipidemia and hypertention |
Data analysis led to the development of four themes and eleven subthemes. The themes were “Perception of hyperuricemia and gout”, “Health plan of hyperuricemia and gout”, “Poor treatment compliance” and “Utilization medical and health resources” (Table 3).
Table 3
| Theme | Subthemes |
| Perception of hyperuricemia and gout | Fall into the neglect |
| | Life In chaos |
| | Incomparable pain and distress |
| Health plan of hyperuricemia and gout | Lifestyle adjustment |
| | Insufficient health literacy capacity |
| Poor treatment compliance | False beliefs of disease |
| | Fear about drug reactions |
| | Incorrect induction of peer experience |
| Utilization medical and health resources | Lack of clear guidance from doctors |
| | Lose confidence in the health services |
| | Strong demand of professional information |
Perception of hyperuricemia and gout
This theme includes three subthemes:fall into the neglect, life In chaos, incomparable pain and distress.
In the asymptomatic stage, patients tend to ignore their own health problems.They had to take treatment until got symptoms (pain, etc.) .It's unfortunate that the unpredictability of acute attacks leads to difficulties in future life planning or social activities, which seriously affects daily work and life planning.
Fall into the neglect
Most of the patients with hyperuricemia did not take attention of disese on account of gout symptoms were not obvious at the first onset. 8 patients had to go to see a doctor when they were painful seriously in joints. Although medical report was shown high blood uric acid for many years, there’re 3 patients said that they were unclear the bad effects of disese, so they did not care about it. 2 patients were told they had hyperuricemia and gout by the researchers, refer to physical examination data.
One participant (N09) said, “My doctor told me I have hyperuricemia, it doesn’t matter, cause I had no symtom or pain.”
Another participant (N02) stated, “Simply, it doesn't feel life-threatening, so I don't pay much attention to it. Sometimes people around you get sick, and I may think of it.”
The third participant (N11) said, “When I feel bad, I just take medicine. I think it doesn't really matter, as a result I didn’t change my eating habits. To be honest, I really regret it.”
Life In chaos
There’s little impact on patients' lives at the asymptomatic stage of hyperuricemia was mentioned.However, at the symptomatic gout stage, their daily life, work and family relationships are all affected, which further causes patients to have negative experiences such as fear, guilt and confidence loss.
One participant (N08) said,“ I can’t bear! My life is in chaos! I couldn’t get off my bed, walk, even work when the disease strikes. I had to ask for leave. I dare not to make a plan in advance, because I’m afraid I can’t participate at that time. In addition, driving less than 5 hours to avoid recurrence.”
Another participant (N07) stated, “It is not convenient to go to work! Although the company is very close to home , just a few minutes from home, I also have to drive to work. My wife often blamed me for not going out to dinner with her.”
The third participant (N01) said, “I had to be taken care of, which was like a paralytic. Once there was no one at home, I crawled into the bathroom for an hour and forty minutes! My bedroom is about two meters away!”
The last participant (N13) said, “This malady tries me so much. I didn't use crutches this time, but I used crutches for the first time. My mom can’t go to work for taking care of me, I feel very guilty.”
Incomparable pain and distress
When gout attacks, the most salient experience is the indescribable pain that causes the sufferer great pain.
One participant (N04) said, “It's as if I could feel the pain with my own pulse, I can't sleep at night.”
Another participant (N06) stated, “Even when lying still, the wind blows over, can aggravate this pain, because it is continuous pain in the morning and evening.”
The third participant (N13) said, “I could feel the incomparable pain as soon as my foot touches the ground. I would like to chop off the foot that time. The worst time, I’m painful when lying in bed, let alone turning over, which giving me gyp! Terrible！”
Management plan of hyperuricemia and gout
This theme includes two subthemes: lifestyle adjustment, insufficient health literacy capacity.11 patients said that they almost never went to a special doctor afer the diagnosis. Most of the participants said the medical treatment effect was poor and they could only adjust their lifestyle by themselves, even though the results were also not ideal sometimes.
Lifestyle adjustment
Diet adjustment. All the 13 patients were aware of the positive effect of diet management on hyperuricemia or gout onset, but only 6 patients adopted behavior control. The main reasons for poor diet control were described by the patients as follows :(1) They felt that diet control had no effect; (2) It’s hard to change the habit of eating meat, and low meat diet is easy to produce hunger, (3) Forget when there is no pain; (4) The temptation for others to eat; (5) Don't mind. The pain medication can relieve it.
One participant (N05) said, “Can diet alone lower uric acid?That's not realistic!You still have to take medication.”
Another participant (N11) stated, “We must keep our diet and eat less red meat, but the habit is hard to change.”
The third participant (N04) said, “Northeast people all like barbecue, especially friends dinner, there is no way to skip.”
Alcohol and drinking water management. Only 3 patients gave up drinking beer, 6 patients only reduced the frequency and quantity of drinking beer, and 4 patients had little behavior control. The reasons for poor drinking habits control were described by the patients as follows: (1) 5 patients expressed their social needs and could not be excused; (2) 4 patients said that they would crave alcohol if they did not drink for a long time. In addition, there was insufficient awareness of drinking water. For example, 8 patients did not have good drinking habits，and the amount of drinking water was obviously insufficient.
One sale post (N04) said, “I have many social intercourse unavoidably. It's disrespectful to the client if you don't drink, and I also have to drink.”
Another participant (N03) stated, “If I don't drink, my head is full of pictures of alcohol. Crazy about wine!It's like you can't do anything well without taking a sip. You can't concentrate.I can't help it.”
The third participant (N09) said, “Usually,I'm not so thirsty that I don't take the initiative to drink water, just a glass or two a day, which I don't think is a necessary thing.Drinking too much water is also easy to go to the toilet, very awkward.”
Exercise. 4 patients took strenuous exercise. Such as: jump rope, playing basketball, volleyball and so on. 3 patients reported only occasional exercise, 6 patients reported almost no exercise. The significance of exercise for disease progression is not recognized.
One participant (N09) said, “When I was young, I played basketball games with my classmates and friends. Now I am too busy to do sports.”
Another participant (N12) stated, “I know I have to control my diet. Can exercise help with this disease?”
Insufficient health literacy capacity
Patients with hyperuricemia and gout have poor health literacy about drug selection, such as insufficient knowledge of drugs, irregular medication channels and poor drug management ability.12 patients were treated with colchicine and/or non-steroidal anti-inflammatory drugs at the time of acute attack. Only one patient received a combination of two hormones and non-steroidal anti-inflammatory drugs. Only 3 of the patients had been treated with uric acid lowering drugs. The choice of medication was relatively random: 2 patients explicitly refused to take the uric acid lowering medication prescribed by the doctor, 5 patients randomly selected some pain-relieving drugs from the network, drug store or their neighbors and colchicine was selected solely for treatment in 3 patients.
One participant (N06) said, “I finally have to buy specific drugs with unknown ingredients from the street store.”
Another participant (N04) stated, “Someone told me his drug is very useful, so I went to his private clinics for quick pain relief and using some small folk remedies.”
A third participant (N11) said, “When I surfed the Internet, I found some medicine may reduce uric acid, and then I went to the drugstore to buy. I think when there are no symptoms, it is not necessary to go to the doctor to prescribe medicine.”
Poor treatment compliance
This theme includes three subthemes: false beliefs of disease, fear about drug reactions, incorrect induction of peer experience.Most patients have delayed diagnosis and treatment for as long as 2-8 years.
False beliefs of disease
The young patients were lack of understanding of disease. Moreover, they had a weak awareness of medical treatment in general.Some interviewees said the reason they delayed treatment is due to a misperception of the disease as tissue contusion or infectious arthritis. In addition, 4 interviewees have no idea about the disease, especially in the asymptomatic stage of hyperuricemia, the disease is considered to be harmless.
One participant (N09) said, “When I was young, I often ran and jumped, so I thought I sprained my ankle or bruised it. It took me 3 years to make a definite diagnosis.”
Another participant (N02) stated, “At that time, I thought it was caused by going out for sightseeing. That time, I developed symptoms only after climbing the Great Wall, so I didn't pay attention to it. As a result, I didn't make a definite diagnosis until 4 years later.”
A third participant (N10) said, “I didn't know what hyperuricemia or gout was at first, so I treated it purely as infectious arthritis, and it took about 8 years to make a definite diagnosis.”
Fear about drug reactions
13 patients concerned about drug reactions, which reduced adherence to the drug. Most of them had adverse experiences of drug side effects so that were filled with fear of drug and reduced prescribing behavior of drug using.
“The side effect is so strong that I dare not to eat drugs usually. Once it appeared rash, and itching and clinking, especially uncomfortable.”
One participant (N07) said, “One of my friends had liver damage after using drugs with drinking, so I have a lot of fear of taking it now.”
Another participant (N12) stated, “Others told me the drugs hurt kidney function, or the other organs, I also dare not take medicine sometimes, although know the action of medicaments is more than side effect? ”
Incorrect induction of peer experience
Some patients share their knowledge about the disease through the experience of friends, but their friends' experience of treatment failure and non-professional advice gave them wrong guidance.
One participant (N09) said, “A friend of mine has this disease. He said it takes a long time to treat. He did not persist in and told me that the drug treatment was not effective and that the disease could not be treated forever!When I heard this, I lost confidence in healing.”
Another participant (N05) stated, “People around me also have gout, and they often tell me no one can be cured completely, medicine is useless.”
A third participant (N13) said, “After I fell ill, I consulted with people around me. Everyone had different opinions. Some people said they should take some medicine, while the others said they shouldn't, because it doesn’t work. I was confused what choice is correct! Is it true that medical treatment is useless?”
Utilization medical and health resources
This theme includes three subthemes:lack of clear guidance from doctors, lose confidence in the health services, strong demand of professional services.Very few patients could correctly and timely use medical and health resources.
Lack of clear guidance from doctors
11 patients said they did not know how to deal with the illness because their doctors provided unclear information, namely the mismatch between information provided and received. For example, the doctor did not tell the patient the specific treatment plan, but only emphasized the management of the acute phase and the improvement of lifestyle. Most of the patients felt that doctors had no effective solutions in a way or help them build the confidence to fight the disease. They were told the better way to defeat disease was rely on a good lifestyle. For example, one patient said he ate pickles and porridge when he had an attack, because the doctor told him to eat a light diet like a monk. The doctor's instructions were so general that the patient did not know the true meaning of a light diet. Only two of these patients were provided with a standard treatment regimen.
One participant (N01) said, “The disease depend on my attention was told by my doctor, and I must take some of this medicine. There were no other information I had got! ”
Another participant (N07) stated, “The doctor gave me a prescription was prescribed to lower uric acid.It have little effect in a few days, my pain symptoms were more serious. I registered for more than an hour to see doctor, and it was finished in three minutes! No detailed instructions were given.”
The third participant (N05) said, “Every time I see the doctor to prescribe that medicine, just a few kinds, colchicine, sodium bicarbonate tablets, and no specific questions about medication.”
Lose confidence in the health services
The interview found that the patient had heard some invalid medical cases, which made the patient lose confidence in effective health management. The main reasons were mentioned as follows:(1) Inadequate utilization of health resources. In 13 cases ,only 1 person went to the hospital regularly in detection of blood uric acid level, 1 person was on a regular basis testing with a simple uric acid detector at home (the rest of the 12 patients had a demand for simple machines，the main reason is that it’s not convenient to visit the doctor), just remaining 11 patients could be detected in the examination each year. (2) Primary health care systems, such as communities and health center, provide little and unclear information. (3) Patients pay little attention to physical examination result provided by primary health care and fail to prevent disease. (4) Inadequate health guidance and ineffective doctor-patient communication in the medical and health system.
One participant (N11) said, “Because I think the information you get from doctor is basically the same as what you get on the Internet. In fact, I feel that if you want to control this disease, the most important thing is to change your lifestyle. If you don’t change your habits，there is no use going to the hospital. What can be done?”
Another participant (N09) stated, “No matter hospital or community medical workers, no one told me the severity of the disease. All I knew was that uric acid should not be too high, but I did not know how much may conform to the standard.”
The third participant (N13) said, “The onset of the disease is really painful, but who can help me? I just trust myself!”
Strong demand of professional services
All patients expressed that they were not very clear about the drug guidance, dietary details (such as the consumption of meat and soy products, the variety and amount of alcohol), and the choice of exercise mode, etc. At the same time, they all put forward strong demand for such information in the interview, hoping for authoritative and accurate therapeutic explanation and service.Secondly, patients expect to receive intelligent and convenient medical services, such as online consultation through mobile apps.Thirdly, the continuation of hospital service is necessary, such as community examinations and health guidance.
One participant (N03) said, “I really hope I would like to have access to relevant health guidance and services at home or in the community, rather than having to go to hospital for health information.”
Another participant (N07) stated, “ Recently, I have seldom checked for uric acid.If I don't feel well, I'll get checked. I consider buying a test instrument, because it is not convenient to go to the hospital after all... I really happy to see we patiens have a disease consultation just at home, maybe use a mobile app?”
The third participant (N12) said, I feel no theoretical support, the information is ambiguous, unreliable,very confused! I do not know whether it is right, if there is professional guidance would be best.”