Project objectives

The overall aim of the proposed research is to enhance understanding of people’s experiences of living with gout, with the purpose of improving treatment and outcomes. This will complement the on-going and planned cohort study and trial in the Inflammatory Conditions Programme.  A secondary aim is to provide a resource for those with gout, their families, friends and the health professionals involved in their care, to provide education and information on this disabling condition that is currently not available.

Objectives

1. Use qualitative research methods, including narrative interviews, to explore how people experience gout in the context of their family, work and social lives.
2. Identify the issues that are important to people with gout including early signs and symptoms, ideas about causes, experience of diagnosis, treatments, professional attitudes, information sources and needs, relationships with family , friends and work colleagues, finding information and support and other issues concerned with gout.
3. Identify approximately 25 aspects of people’s experiences for thematic analysis and illustration with extracts from the interviews.
4. Provide the basis for a site at www.healthtalkonline.org to improve public and professional understanding of the patient’s experience of gout.

Changes to project objectives

None.

Brief summary

Methods

A qualitative research design was used. Semi-structured interviews were conducted, using a topic guide. Interviews were video and/or tape recorded and transcribed verbatim. Data from the interviews was first grouped into broad categories, followed by a more detailed thematic analysis and interpretation.

Objectives

1. Use qualitative research methods, including narrative interviews, to explore how people experience gout in the context of their family, work and social lives.
   We conducted 43 interviews exploring these areas.
2. Identify the issues that are important to people with gout including early signs and symptoms, ideas about causes, experience of diagnosis, treatments, professional attitudes, information sources and needs, relationships with family , friends and work colleagues, finding information and support and other issues concerned with gout.
   Interviews covered a wide range of areas including all of those above. Key findings include:
   • Treatment: Participants’ views and experiences of treatment affected their use of medication, in particular their knowledge and understanding of gout, uncertainty about treatment, previous experiences of using medication for gout, and desire for information and monitoring.
   • Diagnosis: Severe joint pain, combined with no obvious signs of physical trauma or knowledge of injury, caused confusion for patients attempting to interpret their symptoms. Reasons for delayed consultation included self-diagnosis and/or self-medication, reluctance to seek medical attention and financial/work pressures. Factors potentially contributing to delayed diagnosis after consultation included reported misdiagnosis, attacks in joints other than the first metatarsophalangeal joint, and female gender. Resistance to the diagnosis occurred in response to patients’ beliefs about the causes of gout and characteristics of people likely to be affected.
   • Women: The diagnostic process for women with gout can be uncertain due to lack of awareness of gout in women (by health care professionals and women themselves).Women do not have a good understanding of the condition and find it difficult to find information that feels relevant to them. Gout has a major impact on women’s identity and on their roles and relationships.
3. Identify approximately 25 aspects of people’s experiences for thematic analysis and illustration with extracts from the interviews.
   The website contains 28 summaries of people’s experiences covering a range of topics.
4. Provide the basis for a site at www.healthtalkonline.org to improve public and professional understanding of the patient’s experience of gout.
   The website went live in May 2014. For the period May – Dec 2014 there were 1,160 visits. During these visits, 280 videos were played and 1,721 pages were viewed. The most popular pages were: causes of gout; long-term treatment to lower uric acid and prevent attacks and long-term problems; what is gout?; treating the pain and inflammation of attacks; diet & self-management.

Conclusions

Patients’ understanding and experiences of gout and ULT are complex and it is important for clinicians to be aware of these when working with patients. It is also important for clinicians to know that patients’ perceptions and behaviour are not fixed, but can change over time, with changes to their condition, with dialogue and increased understanding. This study is the first to report data about patients’ pathways to initial consultation and subsequent experiences of gout diagnosis. A more targeted approach to information provision at diagnosis would improve patients’ experiences.

Plain English summary

Gout is one of the most common arthritic conditions seen in primary care. It can be very painful and cause disruption to people’s everyday lives. Doctors understand gout and know which treatments should work. However these treatments are not always given to patients or are not used effectively by patients. We do not know the reasons for this. Research carried out in the United States suggests that patients want more information about gout and its treatment.

The proposed project therefore aimed to explore patient experience and understanding of gout, through in-depth interviews. We interviewed 43 people and interviews were video and/or tape recorded and transcribed. Data from the interviews was first grouped into broad categories, followed by a more detailed thematic analysis and interpretation.

Our main findings in three areas include:

• Treatment: Participants’ views and experiences of treatment affected their use of medication.
• Diagnosis: Severe joint pain, combined with no obvious signs of physical trauma or knowledge of injury, caused confusion for patients attempting to interpret their symptoms. Reasons for delayed consultation included self-medication, reluctance to seek medical attention and financial/work pressures.
• Women: The diagnostic process for women with gout can be uncertain due to lack of awareness of gout in women. Women do not have a good understanding of the condition and find it difficult to find information that feels relevant to them.

A gout section on the website (www.healthtalk.org) has been created, which contains 28 summaries of people’s experiences covering a range of topics (http://www.healthtalk.org/peoples-experiences/bones-joints/gout/topics).

The website went live in May 2014. For the period May – Dec 2014 there were 1,160 visits. The most popular pages were: causes of gout; long-term treatment to lower uric acid and prevent attacks and long-term problems; what is gout?; treating the pain and inflammation of attacks; diet & self-management.

Patients’ understanding and experiences of gout are complex and it is important for clinicians to be aware of these when working with patients. It is also important for clinicians to know that patients’ perceptions and behaviour are not fixed, but can change over time, with changes to their condition, with dialogue and increased understanding. A more targeted approach to information provision at diagnosis would improve patients’ experiences.

Dissemination

http://www.healthtalk.org/peoples-experiences/bones-joints/gout/topics

Planned articles

1. A joint effort over a period of time: factors affecting use of urate-lowering therapy for long-term treatment of gout: to be submitted to Scandinavian Journal of Rheumatology/ BMC Medicine.
2. Mapping patients’ experiences from initial symptoms to gout diagnosis: a qualitative exploration: Currently under review.
3. Women’s experiences of gout: a qualitative study: to be submitted to BMC Women’s Health.

Public involvement

A patient group was set up as part of the wider programme of work, consisting of patients with gout, from a local hospital and from a national organisation. Members of this group were consulted about recruitment methods, and also the content of the topic guide used for interviews. A smaller number were then invited to become members of the research advisory group, which has involved commenting on topic summaries for the website.

Impact

A patient story from our research featured in an article in the British Medical Journal (Roddy, E., Mallen, C.D., Doherty, M. 2013. Gout. BMJ-British Medical Journal, vol. 347, Article ARTN f5648).

Recruitment generated a discussion (with experts from the research team) on local radio (Radio Stoke) about gout. The PI was then invited back to talk about the findings on morning radio (Radio Stoke).

During an 8-month period, 1,160 people visited the gout website section on healthtalk.org and it is anticipated that the number of users will continue to grow over time.

A bulletin summarising findings from the study was distributed at the Northern Society for Academic Primary Care conference (Kendall, 2014), and is also available online [http://www.keele.ac.uk/media/keeleuniversity/ri/primarycare/bulletins/MusculoskeletalMatters8.pdf]. 

We have presented findings from the project at the following conferences:

• International Association of Gerontology and Geriatrics World Congress (Seoul, 2013);
• Society for Academic Primary Care (Northern meeting) (Kendal, 2013);
• British Society of Gerontology Annual Conference (Oxford, 2013);
• British Society for Rheumatology (Liverpool, 2014);
• Society for Academic Primary Care (Edinburgh, 2014);
• NIHR National School for Primary Care showcase (Oxford, 2014) - awarded £100 prize in ‘Best Poster Competition’;
• British Sociological Association Medical Sociology Conference (Aston, 2014).

This project was funded by the National Institute for Health Research School for Primary Care Research (project number 136)

Department of Health Disclaimer

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.