Perceptions and practices of self-management among adult patients with gout at a primary care clinic: A qualitative study

Abstract Introduction: Gout is a chronic disease commonly associated with other comorbidities. Patients’ perceived quality of life empowers them in managing their health. Self-management is imparted as part of management among patients with chronic disease. This study aimed to explore the perceptions and practices of self-management among patients with gout from different ethnic groups in Malaysia. Methods: A qualitative study was conducted among Malay, Chinese and Indian patients with gout via semi-structured in-depth interviews at the primary care clinic of University Malaya Medical Centre in either English or Malay language. All participants had a gout duration of more than 6 months and were either taking urate-lowering drugs or not using them at all. Results: A total of 20 participants were successfully recruited for the study. Among the participants, 18 were men, while two were women. Further, nine were Malays; six, Chinese; and four, Indians. The age ranged from 29 to 81 years, while the gout duration ranged from 1 to 30 years. From the interviews, three themes emerged: experiences with gout, types of self-management of gout and factors influencing self-management of gout. Conclusion: Diet control is the main self-management practice of patients with gout. Traditional medicine practices include natural methods such as consumption of different types of vegetable juices, pineapple and papaya. Each ethnicity has its own unique beliefs and food cultures. By understanding the self-management practices of patients from diverse ethnic backgrounds, healthcare practitioners can tailor the treatment of gout to individual needs.


Introduction
Gout is a common in ammatory arthritis caused by defective metabolism of uric acid and is predominantly managed in primary care settings. 1,2Its prevalence di ers according to geographic location, age and ethnicity.For example, the prevalence is lower in developing countries, with Malaysia, China, India, Bangladesh, Pakistan, the Philippines, ailand and Vietnam having a prevalence of <0.5%. 3 In Malaysia, multi-ethnic groups exist, including Malays, Chinese and Indians, who comprise 68%, 23% and 7% of the national population, respectively. 4Malays show the highest prevalence of gout, followed by Chinese and Indians. 5Each ethnic group has its own religious beliefs, traditions, festivals and food cultures.
Since gout is a form of arthritis, patients tend to seek a diverse range of complementary medicine, among which dietary supplements and vitamins are frequently used. 6Nevertheless, the choice of complementary medicine practices is shown to be in uenced by geographical, cultural and social factors, with Asian patients being more likely to use herbal therapy and acupuncture. 6In the National Health and Morbidity Survey 2015, the prevalence of traditional medicine practices among Malays, Chinese and Indians was 31%, 33% and 18%, respectively.e types of traditional medicine practised were cupping and massages among Malays, acupuncture among Chinese and Ayurvedic medicine among Indians. 7tients with gout are substantially a ected by their symptoms, including not only their mobility during acute gout attacks but also their ability to work and socialise. 8As gout is a chronic disease that can present with multiple comorbidities, patients experience a sense of feeling ill that worsens their quality of life. 8,9 loss of bodily functions can a ect their performance and lead to social isolation, contributing to a progressive loss of self.9 Self-management plays an important part in gout management.Adhering to medical management, adapting lifestyle changes for behavioural management and reducing stress for emotional management all contribute to improving gout.10 Studies among patients with gout have shown that self-management is in uenced by knowledge, cultures and beliefs.Most studies have been conducted in countries with a high prevalence of gout and cultural and sociodemographic pro les di erent from those in Malaysia.Diet control has been reported to bene t patients with gout relative to their overall outcome. I is known how ethnic cultural beliefs in uence the perception and self-management of gout.To date, the overall self-management among patients with gout has not been fully studied.Over the years of the researcher's practice in managing patients with gout, she has found it di cult to advise patients about their self-management practices, especially those from di erent ethnic groups, as their cultures, religious beliefs and food habits di er.erefore, this study aimed to explore the perceptions and practices of short-and longterm self-management of symptoms among patients with gout from di erent ethnic groups in Malaysia.e ndings are expected to help physicians understand patients' point of view and consequently provide better patient-centred care.

Methods
Design A qualitative study was conducted via semistructured in-depth individual interviews to explore the perceptions and practices of selfmanagement among adult patients with gout.

Setting, participants, sampling and sample size
Purposive sampling was used to recruit patients who were attending the primary care clinic of University Malaya Medical Centre, were aged more than 21 years, had a con rmed diagnosis of gout by a physician or medical o cer based on their symptoms with at least 6 months of duration and were either Malays, Chinese or Indians.Further, patients who were either receiving or not receiving urate-lowering treatments and were able to communicate in either Malay or English language were included.Conversely, patients who were unable to provide consent owing to cognitive impairment were excluded.e sample comprised 20 participants, determined via data saturation, wherein the interviews were concluded when no new themes emerged.e health belief model was used as the conceptual framework of the study.e topic guide was developed based on the model, which addressed aspects of self-management of gout (perceived susceptibility and severity).
e exploration extended to understanding the patients' lifestyle changes in relation to the cultural practices among their multi-ethnic groups (perceived bene ts, barriers and cues to action).

Data collection
e interviews were conducted by one trained researcher in the preferred language of the participants (either English or Malay), audiorecorded and transcribed verbatim.Field notes, including observed non-verbal cues, were taken during the interviews.Care was taken to minimise potential participant response bias by ensuring that, whenever possible, the participants were interviewed by the researcher's supervisor.

Data management and analysis
e data analysis was conducted concurrently with the data collection, reaching completion at the end of a few transcripts.Eight of the interviews were transcribed verbatim by the researcher, and each transcript was checked for accuracy by the researcher's supervisor.e participants were o ered the opportunity to verify the accuracy of the transcripts, but none of them accepted it.Twelve other interviews were transcribed by an independent transcriber and checked for accuracy by the researcher.Each interview was transcribed using a coding system to ensure anonymity of each participant.e transcripts were not translated, as the researcher was uent in both Malay and English languages.e transcripts were analysed using QDA Miner Lite software by PROVALIS Research, Canada.e data were analysed using a thematic approach based on Strauss and Corbin's method involving open, axial and selective coding. 11Two of the transcripts were coded independently and compared with the codes obtained by the researcher's supervisor, and any discrepancy with the codes was discussed until consensus on the list of codes and possible groups of codes was reached to form axial codes. 12All remaining transcripts were coded accordingly.e group of codes was later categorised under themes according to the objectives of the study, and irrelevant codes were removed.

Results
A total of 20 patients participated in the indepth interviews.Among them, 18 were men, and two were women.ree patients refused to be interviewed owing to language barrier (n=1) and lack of interest (n=2).
e participants were from the three major ethnic groups in Malaysia: Malays (n=9), Chinese (n=7) and Indians (n=4).
e participants' age ranged from 29 to 81 years.e gout duration ranged from 1 to 30 years.Regarding educational level, the majority of the participants received secondary education, followed by those with a diploma, degree and master's quali cation.One participant received only primary education.ree themes emerged from the interviews.Together with their subthemes, these themes are summarised in Table 1 Experiences with gout e participants were asked regarding their experiences with gout.In terms of onset, the participants could remember the onset of their gout as being the most painful and severe attack they ever had.Most participants thought that the symptoms were due to a sprain or twist even though they had no previous injury.e majority found that their gout was caused by their poor lifestyle and food habits, especially consumption of foods that can elevate uric acid levels.Some participants also identi ed that consumption of foods with excess amounts of protein either in the form of meat or vegetables caused their gout.Most participants reported frequent recurrence of acute gout attacks, which were likened to going to war.e participants said that gout substantially a ected their quality of life in several ways, including reduction in their mobility and decline in their social and work lives.Regarding the impact of gout on diet, some participants found it di cult to control their diet, as the foods that they were supposed to control or avoid were their favourite.Some participants also experienced worsening of their symptoms over time, including the formation of tophi, causing joint deformities and complications such as renal calculi.

Types of self-management of gout
Each participant reported varying types of self-management.Diet was the main selfmanagement practice among the participants.
e majority of the participants found that managing their diet, especially foods high in purine, could control their gout.Most participants experienced attacks after eating seafood, beef and mutton.Conversely, a few reported that they had attacks after eating vegetables high in protein such as beans, peanuts, pickled vegetables, cabbages, cauli owers and broccolis.Apart from identifying foods that a ected them, the participants also determined which among their favourite foods or drinks they could still consume without limitations.
is gradual elimination of foods that triggered reactions was accomplished using the trial-and-error method.Further, some participants discovered that another way to control their gout was to limit the quantity of foods consumed, especially their favourite foods.Apart from diet, usage of pain killers was another main self-management practice reported, especially during acute gout attacks, which are generally substantially painful.Regarding traditional medicine practices, many participants were believers.An example of traditional medicine practised was the consumption of natural products such as celery juice, apple cider vinegar, papaya and pineapple juice.Exercise and stress-reducing activities were among the other types of selfmanagement practices.

Factors in uencing self-management of gout
Malay culture has changed over the years with urbanisation.For example, eating 'tomyam', especially seafood tomyam, was reported by the participants to be a practice, especially at urban places.Apart from food, a few Malay participants believed that having gout is a reminder from God not to over eat and to eat healthily.Other participants believed that having gout has no relation to God but is associated with their own doing.When asked about the reasons for not taking allopurinol, some participants mentioned that practising traditional medicine and not relying on modern medicine are part of Malay culture.One participant noticed that he had acute gout attacks after eating ice cream and another participant after drinking iced cube drinks.Accordingly, the relationship of hot and cold foods with gout was explored.e participants believed that eating hot foods was better, as it yielded therapeutic bene ts.Although the Chinese participants usually ate hot foods, one participant said that the di erence in the temperature of foods triggered no reactions.Among the Indian participants, 'dhal' was typically consumed; these participants identi ed that dhal caused a lot of 'angin' (wind), which could be the cause of their gout apart from foods rich in purine.
e Indian participants also believed that being overweight would result in lifelong struggle, with no cure for their gout.In addition to cultural factors, family members played major in uencing roles, especially those with children or relatives who were healthcare practitioners.Having friends with gout was also another in uencing factor reported by the participants.
ey sought insights from their friends regarding their experiences with gout, comparing notes on factors such as the types of food that a ected them.
"Most Chinese will take hot food.ey like to go for supper, eat mee, "wantan mee", all hot.I believe that taking hot food has better therapeutic bene ts." P20, 65, Male, Malay, ve years of gout "Dhal causes pain, maybe because of "angin".Will eat also, little bit."P9, 59, Male, Indian, 30 years of gout "Well, I consult with friends who had this thing and they just recommend to take those medicine la." P17, 67, Male, Chinese, ve years of gout

Discussion
Contrary to historical descriptions of gout dating back to 2600 BC by the Egyptians, the condition is not viewed as a "rich man's disease" or 'disease of kings'. 13,14In the present study, the participants reported that although diet was the main contributing factor of gout, there were other causes, such as genetics and medication.According to the literature, gout is seen commonly in patients more than 20 years of age, and its severity increases with age, plateauing by 70 years of age. 1 Some patients develop gout much earlier at around 16-17 years of age.Gout with an early onset is known as familial gout. is type of gout is recognised as a familial disorder, characterised by a family history of gout.Male members of such families usually develop gout earlier in life, about 7.5 years earlier than those with non-familial gout. 15rein, the participants likened their experience with gout to going to war, facing recurring attacks.
e pain was inevitable to all participants and delineated the onset of gout.eir experiences were in accordance to the typical presentation of gout: severe pain waking them up at night or in the morning, commonly at the rst metatarsophalangeal joint. 16e impact of gout was signi cant on the patients' quality of life, social life and work life, consistent with other reports. 17,18et control was the main self-management practised by most participants.e commonly used ways of diet control were identi cation of triggering foods via the trial-and-error method and eventual avoidance or limitation of the amount of such foods.
e trial-and-error method is an acceptable way of identifying which food a ects patients, as each of them reacts di erently to di erent types of food.Evidence shows that certain diet and amount consumed a ect the clearance of uric acid from the kidneys. 19In this study, the participants reported being empowered by the decision of taking medication, as advised by their physicians.Regarding traditional medicine practices, there were believers and non-believers among the participants.
e reasons for practising traditional medicine were to search for ways to control or cure their gout to avoid dependence on modern medications.Eating pineapple and papaya was found to improve their gout symptoms compared with the other practices used. is nding is consistent with a report showing that the leaf extracts of papaya yielded xanthine oxidase-inhibitory e ects compared with other parts of papaya. 20ong Malay groups, certain food cultural practices have changed over the years owing to urbanisation.Most Malay foods at stalls and restaurants are hybrid forms in uenced by ai, Chinese and French cuisines to suit the taste of locals and foreigners. 21,22Among Chinese groups, food is used to establish relationships among people, such as making new friends or business partners.For example, their dinners usually consist of 4-10 dishes depending on the occasion and are shared together in a round table to unite people together. 23,24mong Indian groups, eating dhal is part of their staple food with rice.In the present study, consumption of 'chapati' or 'thosai' was reported to cause acute gout attacks among the Indian participants.Some participants were even advised to avoid eating dhal, as it causes wind and can aggravate their gout symptoms.
is nding is in contrast to a report showing that dhal has anti-in ammatory e ects, and as a legume, this vegetable protein has less e ect on gout than animal protein. 25Patients with diseases that are considered cold, such as arthritis, rheumatic arthritis and neuralgia, are advised to restrict foods that are also considered cold. 26Cold foods such as leafy vegetables and most fruits have higher water content and lower fat, protein and carbohydrate contents. 27erein, some participants reported that cold foods including ice cubes and ice cream triggered attacks.Nevertheless, further studies are needed to delve into the association of cold foods with gout attacks.
One strength of this study is the use of in-depth interviews; this approach allowed the researcher to explore the participants' perceptions and cultural practices of self-management of their gout.Another strength of this study is that the participants had di erent demographic pro les, allowing the exploration of a wider range of experiences of self-management practices.In contrast, the limitation of this study is that it was conducted at a primary care clinic in an urban setting, making it di cult to explore cultural practices in greater detail.Nevertheless, the ndings suggest that patients can be advised by healthcare practitioners about using a food diary, where they can individualise their own diet using the trial-and-error method.Further research must explore the facilitators and barriers to counselling by healthcare practitioners in primary care settings relative to self-management among patients with gout.
In conclusion, diet control is the main selfmanagement practice of patients with gout.Traditional medicine practices include the use of natural methods.Each ethnicity has its own unique beliefs and food cultures.erefore, by understanding the self-management practices of patients from di erent ethnicities, healthcare practitioners can personalise the management of gout.

Con icts of interest
ere are no con icts of interest to disclose.

you have an attack, people said you want to go here, you can't even join them. I have been pushed on a wheelchair at shopping mall so many times you
Every little while, you get shot here and there."P15, 71, Male, Malay, 19 years of gout "Quality of life.Like this gout happened three times when I was overseas you know, so not healthy.You know, when you're here, when know.It felt so helpless….You know like being a trouble to people."P16, 36, Male, Chinese, 14 years of gout tu anak saya bantu saya, saya dipapahlah."P2, 60, Female, Malay, one year of gout "Overall, it's like going to war.