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Evidence review for patient information
Evidence review A
NICE Guideline, No. 219
1. Patient information
1.1. Review question: What information and support is needed by people with gout and their families or carers in relation to gout, and when should this be provided?
1.1.1. Introduction
People with gout (and their families and carers) require information that explains the causes, diagnosis, treatment and self-management options including dietary advice to support active participation in their care and engage in shared decision making.
As gout is a long-term condition, ongoing support may be required not only during acute episodes, but also to ensure the efficacy of life-long drug treatment such as urate lowering therapy. In current practice the provision of information and support varies widely and dependent on many factors including the knowledge and time available to the clinician.
This evidence review evaluates the information and support needs of people with gout and their families or carers and when this should be provided.
1.1.2. Summary of the protocol
For full details see the review protocol in Appendix A.
1.1.3. Methods and process
This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual. Methods specific to this review question are described in the review protocol in Appendix A and the methods document.
Declarations of interest were recorded according to NICE’s conflicts of interest policy.
1.1.4. Qualitative evidence
1.1.4.1. Included studies
We searched for qualitative studies looking at information and support needed by people with gout and their families or carers and when this should be provided.
Eighteen qualitative studies were included in the review 2, 3, 7, 13, 15–17, 26, 27, 29, 40–42, 46, 53, 56, 58, 59. These are summarised in Table 2 below.
Three studies27, 41, 42 conducted separate qualitative analyses using data from one population of patients, therefore we have amalgamated these three studies within this review.
Most of the studies used semi-structured interviews with a mixture of grounded theory or thematic analysis. One study56 used the Kaupapa Maori approach. One study2 used focus groups.
Key findings from these studies are summarised in the clinical evidence summary below Table 2. See also the study selection flow chart in Appendix C study evidence tables in Appendix D, and excluded studies lists in Appendix F.
Studies included populations with gout on different treatments. Four studies included a population in an area with a higher prevalence of gout (Humphrey 2016),16 (Martini, 2012),29 (Rebello, 2016),40 (Te Karu, 2013).56 Most studies interviewed patients with gout or their partners, however some studies examined the experience and views of health care professionals.
One study examined patient perceptions of a nurse-led package of care (Latif, 2019)26 One study interviewed pharmacists (Counsell, 2018)3, four studies interviewed GPs or as part of a mixed group Jeyaruban, 2016,17 Vaccher, 201658, Humphrey, 201616 and Spencer, 2012.53 Two studies recruited patients from other studies (Howren 2018)15 which included patients who were participating in an eHealth supported collaborative care study (Virtual Gout Study) and Latif 201926 which included patients from the nurse-led care arm of an RCT.
As a lot of papers were identified for this review, inclusion was halted once saturation was reached. Saturation is the point at which no new information emerged from studies that were found to match the review protocol.
A narrative summary of the evidence synthesis is provided in Table 3.
1.1.4.2. Excluded studies
See Appendix F for details of excluded studies.
1.1.5. Summary of studies included in the qualitative evidence
See Appendix D for full evidence tables.
1.1.6. Summary of the qualitative evidence
See Appendix E for full GRADE-CERQual tables.
Narrative summary of review findings
Review finding 1: Patient knowledge of causes of gout
The causes of gout were in general poorly understood by patients. Despite many patients having a family history of the condition, very few believed there to be a genetic link. Some stated they had no idea of possible causes. There was also a lack of knowledge in relation to medication and renal factors linked to gout.
The lack of understanding of the causes of the disease created some doubt about the diagnosis. There was a general view that it was self-inflicted and therefore ‘not a disease’ and this caused people to hesitate in seeking medical help.
Explanation of quality assessment: minor methodological limitations in six of the eight contributing studies due to the unclear role of the researcher and moderate limitations in two studies due to the recruitment process and data analysis; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of moderate/ high confidence in this finding.
Review finding 2: Patient knowledge of dietary advice
Many patients were unsure of dietary advice citing a variety of beliefs on the subject, as found in the causes of gout theme, the lack of knowledge of pathophysiology of the disease gave rise to confusion about dietary triggers. Diet was a frequent topic for discussion, particularly at GP appointments. Published information provided was not always clear and sometimes in contradiction to verbal information given by HCPs. Patients especially wanted to know what their personal triggers where, and how to cope with eating outside of the home.
Explanation of quality assessment: minor or very minor methodological limitations in five of the seven studies due to the unclear role of the researcher and moderate limitations in two due to the recruitment process and data analysis and one study with moderate concerns about the role of the researcher.; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of moderate/ high confidence in this finding.
Review finding 3: Long-term impact of gout
Many GPs focussed on acute attacks and acknowledged that they do not give enough information on the possible long-term consequences of gout, and this leads many patients to be unaware of the chronic nature of the disease. Some GPs appeared reluctant to prescribe allopurinol, citing reasons such as it was better to wait until the patient experience a flare, or that it could cause a flare. Nurses and partners of patients with gout highlighted the need for a better understanding of ULT. Patients who did take ULT often discontinued early as they were unaware of its preventative nature. Compliance with preventative medication appeared to improve when patients were made aware of the long-term issues and possible complications. Patients also expressed a desire to know more about long-term medication.
Explanation of quality assessment: minor or very minor methodological limitations in the contributing studies; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance due to some contributing studies; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of high confidence in this finding.
Review finding 4: Tailored information specifically for females
Often, women with symptoms suggestive of gout were dismissed due to their gender, or their age. This caused delays in diagnosis. There was also not much information specifically tailored to females available. There was a general belief among patients and HCPs that women did not suffer from gout, leading to patients believing that there was something else wrong with them. Female patients wanted information tailored to them and wanted to know how medications could affect female specific issues.
Explanation of quality assessment: minor methodological limitations in the contributing studies; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of high confidence in this finding.
Review finding 5: Online sources of information
Patients mainly stated that the first thing they did after receiving the diagnosis was to check for more information online. While many websites, NHS and others provided helpful information, and patient forums provided a sense of community, patients frequently found conflicting, incorrect, or ambiguous advice. Some patients found the information they retrieved alarming. As a consequence, some patients changed their diets based on online advice and even bought monitoring equipment.
Explanation of quality assessment: minor methodological limitations seven of the eight contributing studies, with the exception of moderate concerns in one study due to recruitment and data analysis; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of moderate/ high confidence in this finding.
Review finding 6: Information/ education preferences
Some HCPs wrongly assume patients know more about the gout than they do, due to it being a well-known condition. Many patients found the information provided contradictory and difficult to follow. Most people got their information from their GP, although some mentioned receiving information from their pharmacist. Most asked for extra information, and preferred written information that they could read at home with their family or carers. This was especially true in cases where the GP did not speak the patient’s first language. When oral advice was given, it was difficult for patients to recall. Some people highlighted that information using pictures was particularly helpful.
Many patients stated that at the point of diagnosis, they would like to have enough time to discuss the implications of their condition and receive information on medication and diet.
Explanation of quality assessment: minor methodological limitations in the contributing studies, with the exception of moderate concerns in one study due to recruitment and data analysis; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of moderate/ high confidence in this finding.
Review finding 7: Role of GPs
With consultation times being so short, it was difficult for many GPs to devote enough time to educating their patients about gout. GPs reported feeling insufficiently trained and lacking confidence in providing gout care and education. They reported that undergraduate and postgraduate training in the area had been poor and most of their knowledge was through self-directed learning. Often, GPs did not manage gout as a long-term condition, and prescribed medication only for acute attacks.
Most GPs questioned were not aware of existing guidelines relating to gout, but suggested flowcharts and websites would be helpful. In certain populations some GPs stated feeling uncomfortable with providing dietary advice due to cultural issues; and language barriers could also hinder the process of providing information.
Explanation of quality assessment: minor methodological limitations in two of the contributing studies and moderate concerns in two studies due to recruitment and data analysis; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of moderate confidence in this finding.
Review finding 8: Role of nurses
Most nurses described having poor knowledge of gout, citing similar experiences to GPs with regards educational opportunities. They expressed a strong desire to learn more about the condition. Many nurses encounter patients with gout as a comorbidity in chronic disease management clinics, but felt they were well-placed to offer monitoring for patients on ULT and provide information to patients during monitoring.
Explanation of quality assessment: all studies had minor methodological limitations due to the unclear role of the researcher; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of high confidence in this finding.
Review finding 9: Role of pharmacists
Pharmacists stated that they usually only provided information and advice at the first prescription but acknowledged that the nature of medication dispensing provided an opportunity for providing further advice and monitoring the condition. Some patients reported receiving information from the pharmacist
Explanation of quality assessment: moderate concerns in both studies due to recruitment and data analysis; no concerns about the coherence of the finding with nothing to lower our confidence; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of moderate confidence in this finding.
Review finding 10: Specialist referral
In some cases, patients asked for a referral to a rheumatologist as soon as they received a diagnosis, or prior to commencing allopurinol. Friends and family of patients with a history of gout would advise them to see a rheumatologist, in some cases instead of seeing a GP. In other cases, patients were unaware of the option of seeing a specialist.
Some GPs referred patients relatively frequently, to a rheumatologist or a dietician, others said it was not necessary when asked.
Explanation of quality assessment
All studies had minor methodological limitations due to the unclear role of the researcher; moderate concerns about the coherence of the finding with a variation in reported experiences; no concerns about relevance; no concerns about inadequacy as the evidence is sufficiently deep (provide themes, with elaborations and examples). There was a judgement of low confidence in this finding.
Qualitative evidence summary
1.1.7. Economic evidence
The committee agreed that health economic studies would not be relevant to this review question, and so were not sought.
1.1.8. The committee’s discussion and interpretation of the evidence
1.1.8.1. The quality of the evidence
Overall, the quality of the evidence was mostly graded by GRADE-CERQual as moderate/high confidence in the findings. An exception was for referral to a specialist which was graded low due to minor methodological limitations as well as a lack of coherence because of variation in experiences reported by patients requesting referral at first diagnosis. The committee thought that this was due to the varying expectations of people with gout but that referral to a rheumatologist is unlikely to be required at diagnosis. The rest of the evidence had only study limitations and no concerns about coherence, applicability or adequacy of the findings. The methodological limitations were mostly due to the unclear role of the researcher and sometimes due to the recruitment process or data analysis. This meant that overall, the committee had confidence in the findings and agreed they were reliable enough to make recommendations. However, they did think there was some limitation in the relevance of the role of GP, nurses and pharmacists as this included the education, they required to improve health practitioner knowledge. Although health professionals were included in the protocol this was regarding what information and support, they thought should be provided to the patient.
1.1.8.2. Findings identified in the evidence synthesis
One of the information needs identified in the review included the ‘causes of gout’, which were found to be often poorly understood by people with gout, their families, and health care professionals even when the patient had a family history of the condition. The prevailing belief was that gout was a self-inflicted disease brought on by dietary habits, rather than occurring as a result of genetics, obesity, comorbidities or medications. This was thought to make people resistant to seeking medical help. This belief linked to the second finding ‘dietary advice’. Many people requested dietary advice at their G.P. appointment to know what foods were advisable and which to avoid. The misconceptions about the effect diet had on the condition demonstrated the lack of knowledge of the pathophysiology of the disease and over emphasis placed on the role diet has in managing the condition. The evidence found people with gout thought that information available on dietary modifications was not always clear and sometimes contradicted the information provided by healthcare professionals. The committee agreed advice on diet was commonly asked for and acknowledged there was a lot of misleading information on diet available. The committee discussed the general lack of understanding of gout by patients and agreed provision of information on the causes of gout, and the signs and symptoms to look out for should be provided. The committee also discussed the importance of an awareness of risk factors when undertaking history taking and discussion of these with the person. Genetic links had been highlighted in the review, but the committee also raised obesity, comorbidities such as chronic kidney disease and hypertension, and polypharmacy were other risk factors that people should be informed about and included within the recommendation.
The theme around the ‘long-term impact of gout’ included the finding that more often GPs focused on acute flares and didn’t provide enough information about the long-term consequences of gout. This could contribute to poor adherence as patients may discontinue their medication earlier because they are unaware that gout is a chronic condition requiring long-term treatment. The evidence reported people discontinuing urate lowering therapy unaware that it is a preventative medication, but also that adherence improved when people were made aware of the long-term consequences of not continuing on ULT. Generally, people wanted more information on long-term medication. The committee agreed with the conclusions of this finding, and it reflected their own experience that there is a lack of understanding about gout being a condition requiring long-term treatment amongst health professionals as well as patients. They acknowledged there is often more focus by clinicians on treating a flare rather than managing the condition in the long-term, and patients will often look to altering diet or lifestyle as a means to improve their condition. The committee wanted to highlight that although a healthy diet and lifestyle should be promoted it will not stop the progression of gout without medication. The committee agreed people needed to be made aware that gout is a life-long condition requiring long-term medication in order to control urate levels, reduce flares and prevent permanent damage to joints.
The themes of ‘online sources of information’ and ‘information preferences’ were linked in that both highlighted conflicting, incorrect or ambiguous information being reported by gout patients. After receiving a diagnosis many people will seek further information via websites. The committee concurred with this and noted people should be signposted to reputable, trustworthy online sources such as NHS websites and recognised gout charities and organisations. People stated they wanted more time to discuss their condition particularly around the time of diagnosis. Generally, there was a preference for having written information that could be read in the person’s own time and shared with family or carers.
There were a few studies that looked at the requirement for ‘tailored information specifically for females. Often the possibility of women having gout was dismissed by health care professionals because of the belief it is not a condition that affects women, and this can lead to delays in diagnosis. Female patients wanted information tailored more towards them and their specific issues such as gout within younger age groups and links with menopause. The committee agreed that there was an embedded belief that gout was primarily only found in older males and that women could be mis-diagnosed because of this.
Generally, GPs and nurses reported that they lacked training in the condition and consequently believed they had insufficient knowledge to provide education and information to patients with any confidence. Nurses related their experience of caring for people with gout who have other chronic conditions and believed with the correct training they were well placed to monitor and provide information on medication such as ULT as part of monitoring a person’s other conditions. Pharmacists also stated they could bridge the gap between the GP and patient, providing advice on medication and directing people to other sources of information or back to their GP.
From the findings presented the committee decided to recommend providing tailored information as what was required would vary according to the needs of the individual and the stage of the care pathway they were on. They agreed it was important to highlight that this was best provided not only at the time of diagnosis but also at follow-up appointments, as the flare may not be the best time for patients to take in information when they are in acute pain. Providing information at subsequent appointments provides the opportunity to reinforce important messages and this allows the patient time to think about subsequent questions to ask to get the information they require. The committee reflected on the themes found within the evidence and used this as a basis to detail the key information that should be provided within the recommendation.
1.1.8.3. Cost effectiveness and resource use
Cost effectiveness evidence was not sought as this was a qualitative review. The recommendations made as a result of this review question provide guidance on what topics should be covered within a patient review. The committee agreed that this provision of information would not require an additional appointment and would likely be provided at the time of diagnosis or scheduled follow-up appointments. Therefore, this recommendation is not expected to result in a substantial resource impact.
1.1.8.4. Other factors the committee took into account
The committee noted that information on how to manage gout flares was not a theme that had emerged strongly from the evidence, however providing a person with information on the treatment options available was very important in order that the person can act quickly and bring their symptoms under control. Therefore, based on committee consensus this was included in the recommendation.
The committee agreed cross reference should be made to the recommendations within the NICE guidance Patient experience in adult NHS services and Shared decision making
The committee identified UK gout society as a useful online resource to use.
1.1.9. Recommendations supported by this evidence review
This evidence review supports recommendations 1.2.1 to 1.2.2.
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Appendices
Appendix A. Review protocols
Review protocol for patient information (PDF, 168K)
Appendix B. Literature search strategies
- What information and support is needed by people with gout and their families or carers in relation to gout, and when should this be provided?
The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.32
For more information, please see the Methodology review published as part of the accompanying documents for this guideline.
B.1. Clinical search literature search strategy (PDF, 184K)
Appendix C. Qualitative evidence study selection
Download PDF (103K)
Appendix D. Qualitative evidence
Download PDF (391K)
Appendix E. GRADE-CERQual tables
Download PDF (163K)
Appendix F. Excluded studies
Clinical studies
Table 6Studies excluded from the qualitative review
| Reason for exclusion | |
|---|---|
| Aati, 20141 | No relevant outcomes |
| Curiel, 20124 | Incorrect study design: systematic review of drugs for people with gout and CKD |
| Davatchi, 20085 | Incorrect study design: Epidemiological study; quantitative interviews with the general population to assess prevalence of different musculoskeletal complaints |
| Day, 20176 | Incorrect study design: RCT protocol |
| Dowell, 20178 | Does not match review question (secondary analysis of a paper looking at gout consultations) |
| Fernon, 20169 | Does not match review question (patients’ views on design of an e-tool for gout management) |
| Fields, 201711 | Incorrect study design: not qualitative- evaluating MDT educational programme (quantitative data only) |
| Fields, 201810 | Incorrect study design: review paper |
| Gow, 201112 | Not available |
| Hmar, 201514 | No relevant outcomes |
| Jimenez-Linan, 201718 | Incorrect study design: survey of online patient information resources; accuracy assessed by rheumatology fellows |
| Jordan, 201919 | Incorrect study design: Linguistic analysis of search histories of people searching for gout; no qualitative data analysis (themes) |
| Katz, 197520 | No relevant outcomes |
| Kelly, 202021 | Incorrect population (included other forms of arthritis; very limited themes specific to gout) |
| Kiadaliri, 201922 | Incorrect study design: Matched cohort study assessing relationship between educational inequalities and mortality in people with gout |
| Kool, 201623 | Incorrect study design: Delphi conducted among health professionals and systematic review to identify potential items of a gout specific ICF core set |
| Krasnoryadtseva, 202024 | Incorrect study design: RCT comparing education interventions including personal versus generic medical images |
| Krasnoryadtseva, 202025 | Incorrect study design: the general public completed a quantitative questionnaire about an information leaflet on gout. |
| Moghimi, 201530 | Incorrect study design: Epidemiological study; quantitative interviews with the general population to assess prevalence of different musculoskeletal complaints |
| Morris, 201631 | Incorrect study design (analysis of consultations- not interviews) |
| Oh, 201133 | Incorrect study design: Patient interviews and literature review to evaluate a web-based self-management program; states that interview questions were open and close ended but all results are in percentages. |
| Oh, 201334 | Not English language |
| Petrie, 201835 | Incorrect study design and population: quantitative questionnaires used to assess effect of renaming gout of illness perception among general public. |
| Punzi, 202036 | Incorrect study design (survey- quantitative data only) |
| Rai, 201837 | Incorrect study design: systematic review which does not directly answer question and has no quality assessment. |
| Rakic, 201738 | Incorrect study population: interviews about synthetic biology with people with gout and diabetes and unclear what proportion had gout |
| Ramsubeik, 201839 | Incorrect study design: Systematic review of RCTs and observational studies of educational and behavioural interventions |
| Rogers, 201943 | Incorrect study design: RCT comparing effect of different study invitation materials on trial participation |
| Rolland, 201744 | Incorrect study design: abstract only |
| Schroter, 201945 | Incorrect study design: RCT comparing effect of different competing interest statements on doctors’ perceptions of education articles |
| Singh, 201448 | No relevant outcomes |
| Singh, 201447 | No relevant outcomes |
| Singh, 201449 | No relevant outcomes |
| Singh, 201950 | Incorrect study design: literature review |
| Singh, 202051 | Incorrect study design: internet survey- form with a list of responses to areas for improvement |
| Spaetgens, 201652 | No relevant outcomes |
| Spencer, 201253 | Incorrect study design: systematic review which is not relevant to outcomes of interest. |
| Stewart, 201654 | Incorrect study design: Systematic review of RCTs and observational studies of the first metatarsophalangeal joint |
| Stewart, 202055 | No relevant outcomes |
| Teoh, 201957 | Incorrect study design: flare diary entries were analysed; no qualitative data |
| Zhang, 200760 | Incorrect study design: Quantitative questionnaires used to assess risk factors for recurrent gout attacks. |
Table 7Studies identified but not included in the qualitative review due to saturation being reached
| Study | Reason |
|---|---|
| Lindsay, 201128 | No relevant themes apart from a single quote adding to the theme of l for long-term impact of gout. The theme had already reached saturation point (where 8 studies were already included) so this study was excluded |
Tables
Table 1PICO characteristics of review question
| Objective |
|
|---|---|
| Population and setting |
Inclusion: Adults (18 years and older) with gout and their families or carers, and health care professionals. Opinions of adults with gout and their families or carers, and health professionals. Exclusion: People with calcium pyrophosphate crystal deposition, including pseudogout. |
| Context | The context will depend on what is found within the studies. |
| Review strategy | Synthesis of qualitative research. Results presented in narrative and table format. Quality of the evidence will be assessed by a GRADE CerQual approach for each review finding. |
Table 2Summary of studies included in the evidence review
| Study | Design | Population | Research aim | Comments |
|---|---|---|---|---|
| Chandratre 20162 | Focus groups with thematic analysis |
Patients from the baseline phase of a cohort study of HRQOL in gout. n= 17; 15 M/2F; mean age 71 years UK | To examine the impact of gout and its treatments on health-related quality of life using focus group interviews. |
Exclusively Caucasian and mainly male. Study was focused on HRQOL in gout. |
| Counsell, 20183 | Qualitative, semi-structured interviews with thematic analysis |
Community pharmacists n=15; 11F/4M Australia | To explore the views of Australian pharmacists on their roles in gout management and to identify factors influencing their involvement in gout management. | Selection bias: the pharmacists were known to the researchers. |
| Deprouw, 20197 | Qualitative, semi-structured interviews with grounded approach |
Nurses (n=20), 9 rheumatology, 11 internal medicine; and partners of gout patients n=12; 11F/1M France | To explore partners’ of gout patients and nurses’ knowledge and representations of gout. | Partners of gout patients and nurses |
| Harrold 201013 | Qualitative, semi-structured interviews with thematic analysis |
Patients with gout (n=26) and providers who care for gout patients (n=15). USA | To examine patients’ and health care providers’ views on the treatment of gout to better understand why management is suboptimal. | Patients and health care providers |
| Howren 201815 | Qualitative, semi-structured interviews |
Patients with gout n=12; 10 M/2 F mean age 66.5 ± 13.3 years Canada | To use patients’ perspectives to construct an explanatory framework to understand how patients become engaged in the management of their gout. | Patients who were participating in a proof-of-concept study (Virtual Gout Study) were recruited. Patients had a SUA>360μmol/l in the past 2 months. |
| Humphrey 201616 | Qualitative, semi-structured interviews |
N=14 professionals who had regular interactions with patients with gout (six general practitioners (GPs), four nurses, and one pharmacist.) New Zealand | To explore the experience of treating gout among primary care clinicians and understand the perceived barriers to effective therapy. | HCPs |
| Jeyaruban, 201617 | Qualitative, semi-structured interviews with thematic analysis |
N=14 providers (GPs) Australia | To explore management of gout from the perspective of GPs, while identifying the barriers and possible strategies for improvement. | GPs |
| Latif, 201926 | Qualitative, semi-structured interviews |
Patients with gout N=30; 26M/4F Age: 65.17 (11.51) years (mean), 36–85 years (range). UK | To explore patient perception of the role of a nurse-led complex package of care in facilitating engagement with urate-lowering therapies (ULTs) in the management of gout. | Participants were recruited from an RCT investigating a nurse-led package of care for gout. |
|
Liddle, 201527 Richardson, 201641 Richardson, 201542 | Qualitative, semi-structured interviews |
Patients with gout N=43 67%M Age range 30–89 years (Richardson 2015 n=14 age range 32 to 82) UK |
(Richardson 2016) To explore reasons for the low prescription rate for urate lowering therapy (ULT) and the low adherence to treatment through an exploration of patient experience and understanding of ULT treatment for gout. (Liddle 2015) To explore patients’ experiences from initial symptoms to receiving a diagnosis of gout. (Richardson 2015) To explore the perspectives of females on receiving a diagnosis of gout and of female-specific issues related to the diagnosis. |
Liddle 2015 and Richardson 2016 had the same population but had different analyses performed. Richardson 2015 was based a subset of female patients. |
| Martini, 201229 | Qualitative, semi-structured interviews with thematic analysis |
Patients with gout N= 60 54M/6F Age range: 23–93 years New Zealand | To explore the knowledge and perceptions of people with gout toward the disease and to determine the impact gout has on lifestyle including possible barriers to treatment. | All of the patients had been prescribed allopurinol or colchicine. |
| Rebello, 201640 | Qualitative, semi-structured interviews with thematic analysis |
N=30 patients 24M/6F Age range 28–76 years New Zealand | To explore patients’ knowledge on the use of gout medicines, and in particular their awareness of the maximum dose of colchicine, the dangers of colchicine overdose, and their opinions on restricting colchicine dispensing. | Patients were from an area with a high prevalence of gout |
| Seow, 202046 | Qualitative, semi-structured interviews with thematic analysis |
Patients with gout N=15 15M Age range 32–85 years Ethnicity: 12 Chinese, two Malay, and one Filipino Singapore | To explore the perceptions regarding living with gout of patients with gout in Singapore | All participants were male |
| Spencer, 201253 | Qualitative, semi-structured interviews with grounded theory analysis |
20 patients with gout (15M/5F) and 18 health care professionals Mean age: 61 years UK | To explore patient and provider illness perceptions and barriers to effective management of gout in general practice. | Patients had an SUA level >360μmol/l (i.e., were sub-optimally treated) |
| Te Karu, 201356 | Qualitative, semi-structured interviews with thematic analysis |
Maori population. N=12 67%M Age range: 48–79 years, New Zealand | To explore the perceptions, understanding and treatment of gout among Maori | Kaupapa Maori approach for methodology |
| Vaccher, 201658 | Qualitative, semi-structured interviews with thematic analysis |
15 GPs (6M/9F) 22 patients with gout (19M/3F) Median age: 59 years Australia | To explore the understanding of gout and its management by patients and general practitioners (GP), and to identify barriers to optimal gout care. | Patients and GPs |
| Van Onna, 201559 | Qualitative, semi-structured interviews with grounded theory analysis |
Patients with gout attending primary or secondary care. N=15 14M/1F Mean age 63 years The Netherlands | To explore the health literacy of patients dealing with gout and to understand perceptions that might account for non-adherence to urate lowering therapy. | 7 were using colchicine or NSAIDs plus ULT, 3 were using only colchicine or NSAIDs, 5 were using only ULT |
Table 3Review findings: information and support needs
| Main findings | Statement of finding |
|---|---|
| Information needs | |
|
Causes of gout 8 studies Patients: Chandratre 20162, Liddle, 201527, Martini, 201229, Partners and nurses Deprouw, 20197, Patients and HCPs Harrold 201013, Spencer, 201253, Vaccher, 201658 HCPs Jeyaruban, 201617 | Causes of gout were poorly understood and many alternative causes were suggested, including alternative pathophysiologies, injury and ageing. |
|
Dietary advice 8 studies (from 7 populations Patients Chandratre 20162, Latif, 201926, Liddle, 201527, Martini, 201229, Richardson, 201641, Seow, 202046, Partners and nurses Deprouw, 20197,, Patients and HCPs Vaccher, 201658 | Many patients requested dietary advice, commonly wanting to know which foods and drinks were ‘safe’ and what were to be avoided. |
|
Long-term impact of gout 8 studies Patients Chandratre 20162, Howren 201815, Liddle, 201527, Martini, 201229, Richardson, 201641, Van Onna, 201559 Partners and nurses Deprouw, 20197, Patients and HCPs Vaccher, 201658, | Gout is often treated as an acute condition and the long-term consequences were not frequently understood or discussed. |
|
Tailored information for females 4 studies (from 3 populations): Patients Liddle, 201527, Martini, 201229, Richardson, 201542, Patients and HCPs Spencer, 201253 | Delays in diagnosis due to gender, poor provision of female specific information. |
|
Online information 5 studies: Partners and nurses Deprouw, 20197, Patients Howren 201815, Liddle, 201527, Van Onna, 201559 Patients and HCPs Vaccher, 201658, | Patients commonly searched the internet for information following diagnosis. Information online was often found to be incorrect, contradictory or ambiguous. |
|
Information preferences 8 studies (from 7 populations): Patients and HCPs Harrold 201013, Vaccher, 201658, Patients Latif, 201926, Liddle, 201627, Rebello, 201640, Richardson, 201641, Seow, 202046, Van Onna, 201559 | Patients wanted more time for discussion during consultations, especially at diagnosis, more oral and written information and to be involved in the decision- making process. |
| Support needs | |
|
Role of GPs 4 studies: Patients Martini, 201229, Te Karu, 201356#1216, Patients and HCPs |
Need for improved and continuing medical education. GPs felt they didn’t have enough time or appropriate material to provide to patients. Language/ cultural barriers were cited as a barrier to providing education and resulted in different understandings of gout. There was a lack of awareness of guidelines on gout. Most information was provided verbally and there was a lack of resources for providing information about gout, such as reading material, websites, and video resources. |
|
Role of nurses 3 studies: Partners and nurses Deprouw, 20197, HCPs Humphrey 201616, Patients Latif, 201926, | Nurses felt that with more training they would be better placed to educate and monitor patients. |
|
Role of pharmacists 2 studies: Pharmacists Counsell, 20183, Patients Martini, 201229 | Pharmacists had a good understanding of medication related issues and of dietary information. Able to ‘bridge the gap’ between patient and GP due to having more time. Opportunity to offer information at each prescription. |
|
Referral to specialists 5 studies (from 4 populations): Partners and nurses Deprouw, 20197, Patients and HCPs Harrold 201013, Patients | A variety of views on specialist referral were found, both from patients, family/ friends and their GPs. |
Final version
Evidence reviews underpinning recommendations 1.2.1 and 1.2.2 in the NICE guideline
National Institute for Health and Care Excellence
Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.
NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.