The Illness Perception and Health Promotion Behavior of Young and Middle-Aged Patients With Hyperuricemia and Gout in Northeast China_A Qualitative Study

Background: Hyperuricemia has become a threat to human health and a disease easily overlooked by the patient. The majority of patients often have the wrong health attitude and lack of health promotion behaviors. In this study, we explore the inner experience of young and middle-aged patients with hyperuricemia and gout and describe their health promoting behaviors in Northeast China. In order to improve their cognitive level, disease management ability, and nally provide a theoretical basis for comprehensive intervention. Methods: A qualitative research design was used to examine the illness perception and health promotion behavior of patients with hyperuricemia and gout in Northeast China. Thirteen young and middle-aged patients with hyperuricemia and gout were sampled with maximum variation in Daqing City and Haerbin City in Northeast China. The data analysis involved several levels of analysis consistent with qualitative research. Results: The following themes were relevant to young and middle-aged patients with hyperuricemia and gout in Northeast China: “Perception of hyperuricemia and gout”, “Health plan of hyperuricemia and gout”, “Poor treatment compliance” and “Utilization medical and health resources”. Conclusions: The respondents’ had insucient cognition of hyperuricemia and low ability of health promotion. Medical staff should provide as much as possible to strengthen health promotion behavior of patients with interventions.

managing disease [10]. A false perception of disease can lead to the patients neglect health problems and weaken treatment compliance and other health behaviors [11][12][13]. Finally, the risk of recurrence is increasing and wasting of health and social resources.Therefore, the disease cognition education of patients with hyperuricemia and gout is the key content of treatment management.
Health promotion behaviors are a group of behaviors manifested by individuals or groups and it's objectively bene cial to their own and others' health [14]. Palumbo showed that the body health, selfrealization and self-satisfaction can be enhanced through health promotion behaviors, so as to improve the healthy life quality of individuals [15]. However, there're still many problems with health-promoting behavior in patients with hyperuricemia and gout.In the form of a healthy lifestyle (diet, exercise), treatment compliance, external resources utilization and other aspects. As a previous study described, rapidly increasing economic development has led to unhealthy lifestyles [16]. Sedentary lifestyle, alcohol consumption and insu cient intake of green vegetables and fruits in patients with hyperuricemia are closely associated with increasing blood uric acid [17,18]. In addition, many patients fail to reach treatment target on account of inadequate adherence to treatment [19]. The main reasons are the same as the lack of educational resources for gout patients, except for the cognition of disease and drug beliefs [10,20]. The health care system's emphasis on hyperuricemia and gout education, specialized training and/or continuing education in the prevention and management of gout, and continuing education and monitoring of patients with gout can also have in uence on patients' health-promoting behaviors [21,22].
Most studies of hyperuricemia have focused on epidemiology, etiology, intervention, while few have considered the health promotion attitude and behaviors of young and middle-aged patients with hyperuricemia and gout. China has started to attach great importance to the prevention of hyperuricemia, but there is also a lack of early health screening and management. The purpose of this study was to explore the inner experience of patients with hyperuricemia and gout and describe their health promoting behavior by using the method of qualitative study. In order to improve their cognitive level, disease management ability, enhance their quality of life and health outcomes, nally provide a theoretical basis for comprehensive intervention in Northeast China.

Study design
A phenomenological qualitative study was conducted and interviews and observations were used to collect data for conventional content analysis through a qualitative descriptive method conducted by the rst author. Qualitative studies enable researchers to describe phenomenon in context using various data sources [23].Qualitative research is inductive, whereby researchers draw from naturalistic and constructivist perspectives to describe informants' perceptions and experience of the world [24]. Content analysis can explain and classify textual data by considering individual cultural and contextual effects on phenomena.The nal products of data analysis for content analysis are classi cations and themes [25].

Participants
This research adopts the convenience sampling method,and nally thirteen patients with hyperuricemia were sampled with maximum variation in Daqing City and Haerbin City in China.The inclusion criteria were having hyperuricemia and having experienced gout symptoms or not. Further information gathered from the patients interviewed included demographic background, age, gender, level of education and family income per month, symptoms of gout, location of rst gout attack,acute attack in the last one year, complications.
All of the included patients with hyperuricemia were asked and agreed to participate in this research and all participants were written informed consent.

Data collection
The data collection was carried out from March to Sptember 2018.Before the formal interview, the respondents should be fully informed about the purpose, basic steps and privacy protection of the research. Considering the disadvantages of simple structured interview, non-structured interview is integrated into the interview process. After establishing a trusting relationship with the respondents, it is adopted to start with the narration of the medical history and then incorporate the outline of the content required by the interview in the narration process.The interviewees'behaviors and expressions were recorded and observed in a timely manner with the consent of the respondents. After the interview, we returned the transcripts to the respondents, and they were asked to check whether the transcripts were consistent with their intention in order to improve the credibility of the results.
When information was repeated in the process of the interviews, the sample size was considered to have reached saturation. All patients with hyperuricemia spoke Chinese, and the researcher translated the interviews into English to obtain the results. The outline of the interview was as follows (Table 1) University. Before each interview, the researcher explained the purpose and content of the study to the respondents and promised con dentiality. The participants then agreed to participate in the research and signed the informed consent. Participants had the right to refuse to participate in the research at any time without reprisal.

Results
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 rst gout attack(patients with gout): 7 patients had toes (including 4 left rst toe ngers, 2 right rst toe ngers, and 1 left ring nger), 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). 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). 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 di culties 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 rst 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 con dence 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 rst 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, insu cient 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 insu cient awareness of drinking water. For example, 8 patients did not have good drinking habits and the amount of drinking water was obviously insu cient.
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 signi cance 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?" Insu cient health literacy capacity Patients with hyperuricemia and gout have poor health literacy about drug selection, such as insu cient knowledge of drugs, irregular medication channels and poor drug management ability.12 patients were treated with colchicine and/or non-steroidal anti-in ammatory drugs at the time of acute attack. Only one patient received a combination of two hormones and non-steroidal anti-in ammatory 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 nally have to buy speci c 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 de nite 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 de nite diagnosis until 4 years later." A third participant (N10) said, "I didn't know what hyperuricemia or gout was at rst, so I treated it purely as infectious arthritis, and it took about 8 years to make a de nite 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 lled 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 con dence 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 con dence 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 speci c 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 con dence to ght 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 nished 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 speci c questions about medication." Lose con dence in the health services The interview found that the patient had heard some invalid medical cases, which made the patient lose con dence 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."

Discussion
This is the rst qualitative study speci cally aimed at exploring the inner experience of disease and health promotion behavior with hyperuricemia and gout.
Promoting disease cognition and strengthen disease education In this study, more than half of the patients with hyperuricemia or gout didn't understand the disease pathophysiological process, and the severity of disease complications is not clear. Their awareness of the normal blood uric acid and the treatment target is low, even they couldn't tell the difference very well bettween gout anti-in ammatory analgesic drugs and uric acid reduction medicine.
Health attitude determines health behavior, which is the root reason of patients' poor health promotion behavior ability. Domestic studies have shown that the cognitive level of patients dealing with gout is insu cient, which is not only related to gender, education level, ethnicity, race, etc., but also related to the attention to the acute onset of gout by doctors and patients, who thought incorrect diet was the main reason of having gout one-sidedly [26]. A study also supported the underrecognition of hyperuricemia (the pathogenesis and in uence factors of the disease) among medical personnel in primary health care system [27]. The neglect by disease managers could have a profound effect on the prognosis of disease. It is suggested that patients and medical workers should pay more attention to disease management, strengthening disease education and screening complications to help patients achieve healthy behavior changes are very necessary [28].
Optimizing the health service and improve patients' belief in treatment In the interviews, when mentioning the utilization of health resources, nearly half of the respondents obtained the get disease-related knowledge from the internet or their peers around them, and they were unwilling to choose the community or hospital for treatment, the utilization of health resources was insu cient. This phenomenon is related to insu cient attention to the age trend of hyperuricemia younger and younger, low health literacy of patients, and insu cient con dence in the medical and health system. In this study, 5 respondents were misdiagnosed in the early stage of the disease, 5 respondents had delay of treatment, and 4 respondents did not receive enough medical support. Studies have found that more than half of the resources were written at a highly complex level, some content areas were lacking coverage, including comorbidity risks, uric acid target levels, and continuing allopurinol during acute attacks [29]. The lack of patients' belief in treatment is closely related to local health resource allocation and service quality. The health resources should support more speci c information (risk of complications, uric acid levels, medication use during acute episodes, and other self-management methods). Therefore, it is an important task to optimize the management mode of health system and improve service capacity. Only systematic and standardized diagnosis, treatment and management of hyperuricemia and gout can maximize the prevention and control of diseases and complications.

Improving treatment compliance and health promotion ability
This study found that gout patients were at a low level of health promotion ability in lifestyle adjustment, access to health information, and interaction of social resources. Especially in terms of treatment compliance, self-management ability is poor. In the interviews, only 1 patient received standardized treatment, and most patients indicated that they had different degrees of poor medication compliance, they only paid attention to the remission of symptoms during the acute attack period. A meta-analysis of 16 studies showed that the compliance of uric acid lowering drugs was 10-46% [30], while in this study, the compliance was only 8%, which may be related to the popularization of disease-related information, inadequate promotion of disease prevention, and insu cient attention to the disease. An innovative oneyear nursing project targeting 126 patients with gout found that after 1 year of health education, improved clinical guidance from physicians, and enhanced visits to patients, 72% of patients achieved the serum uric acid target of <0.36mmol/L [31]. Insu cient knowledge of disease prevention and health care will cause poor health attitude, and has affect on health promotion behaviors, making patients seldom take proactive preventive measures, thus delaying the best opportunity for disease prevention and treatment, increasing the incidence of complications, leading to a signi cant increase in the utilization rate of medical services and medical costs [32]. With the increase of gout patients year by year, nursing intervention of health promotion behavior training should be widely used. It has positive in uence on disease prevention, screening, medical history collection, diagnosis and treatment, and long-term management.

Limitations
Firstly, the sample size is small. The research object of this study covers only two provinces in Northeast China and only one of the 13 participants is female. However, the most difference of her statements from other participants' was the in uence on her appearance because of gout, such as the statement of "unable to wear high heels, which greatly affects her image". The other information provided was not signi cantly different from other participants. Secondly, because cultural differences exist between native English and Chinese speakers, the translation of the participants from Chinese to English is limitation of the research. Further enhancing of the theme extraction is indispensable. Therefore, the results can not necessarily be generalized to all patients with gout in China. Additionally, the education level of the population studied is above university level. However, it is worth pondering that even the middle-aged and young people with higher education level had such a low level of health promotion ability.It also con rms the importance and necessity of our next intervention.

Suggestions for future studies
Future studies may add quantitative approach to in-depth explore the factors that in uence healthpromoting behavior in patients with hyperuricemia and gout, and to develop interventions to improve health-promoting behavior.

Conclusions
The ndings of the current study show that 13 young and middle-aged patients in Northeast China had insu cient cognition of hyperuricemia and low ability of health promotion. In the future work, medical staff should provide as much as possible to strengthen health promotion behavior of patients with interventions, families should also be urged supervision and understanding for patients, to provide a good living environment for patients, at the same time, hospital staff and community health workers have the mission on providing personalized targeted health education for patients. Continuous care should be strengthened so that patients and their families can make the best utilization of medical resources and improve their health promotion behavior to improve self-management ability and quality of life.