Background

Gout arthritis is a chronic condition characterised by joint swelling and pain. It is the result of excess uric acid in the blood, which crystalise around the joints. Untreated, this condition may lead to joint and kidney damage, affecting quality of life. Gout can be treated effectively within primary care through uric acid-lowering medications and regular blood tests, which monitor serum uric acid levels. These medications are preventative, rather than used to treat gout attacks once they have occurred.

Māori and Pasifika are disproportionately affected by gout arthritis, experiencing a higher burden of disease. The genetic element to gout means these groups have a higher prevalence, in addition to presenting with earlier onset and greater severity of symptoms. Despite this, Māori and Pasifika are less likely to be identified or to utilise services within primary care, which leads to increased use of secondary care services and hospitalisations.

In 2020, the Whanganui Regional Health Network implemented the Gout Stop Programme within primary care. This includes both general practice and pharmacy as access points, with kaiāwhina available as additional support and to reduce barriers to participation. The Gout Stop programme is a 12-week gout management programme, aimed at providing increased access to medication and improving patient health literacy. The purpose is to reduce barriers for Māori, leading to good gout management. This is achieved through:

• Two initial free consultations with a general practitioner for eligible people (Māori, Pasifika, and/or CSC holder), with a three month follow up
• Point of care serum uric acid testing by community pharmacists, which includes gout education and consultation
• Blister packaged medications, funded for the duration of the 12-week programme
• Kaiāwhina support
• Education and information to key community organisations (e.g., work places, churches, etc.)
• Programme support for general practices, community pharmacy and other health care providers (e.g., WAM), including education and training
• Localised Community HealthPathways for gout arthritis
• Data and feedback provided to general practice

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The Current Project

The Health and Research Collaborative (HARC) was asked to carry out qualitative semi-interviews with Whanganui gout sufferers. Participants were asked about their gout journey, the impact of gout on health and wellbeing of the individual and whānau, and their understanding of gout. For those who had been part of the Gout Stop Programme, they were asked to talk about their experience of the programme and areas where things worked well or could be improved. A total of thirteen people were interviewed.

Four main themes were identified from the study. These included whether or not participants were aware of the Gout Stop Programme, the Patient Journey, the Medical Pathway, and areas for Quality Improvement.

Participants varied in their level of awareness of the Gout Stop Programme; however, it was felt that having access to a programme would be of benefit. Participants also varied in their levels of understanding about gout and gout-related treatment. Friends and whānau appeared to play a significant role in the gout journey, providing both information about gout and physical and emotional support. The concept of emotional support was considered important and it was suggested that having a gout group might be one way of achieving this level of support.

Participants tended to have been experiencing gout episodically for a number of years. They discussed how time had influenced their levels of understanding around their triggers and the best ways to manage their symptoms. For some, this meant taking regular medication, while for others, this consisted of taking pain relief any time there was a flare up. The physical impact of gout on participants was evident, with patients describing the nature of their pain and discussing the debilitating effects it had on their every day lives. Moreover, there was an awareness that gout had an affect on people’s emotional health as well.

Patients discussed their experiences with medical professionals (e.g., GPs and pharmacists) around their gout diagnosis and managment. In addition, they described many frustrations around the current medical pathway for gout management, including concerns about how difficult it is to access a GP for a consultation and the problems with telehealth and virtual consultations on their care. In line with this, participants discussed their frustrations about the difficulties of accessing medication when they were unable to attend their own GP for any reason. Patients discussed the role of medication in their gout journey, which highlighted that those who are consistently taking their prescribed gout medication are managing their gout well. In addition, it demonstrated that many people are not taking gout-specific medication; rather, they are using other forms of pain relief to manage gout flare ups as they arise.

Finally, participants discussed areas where they felt there could be an improvement in service provision for people with gout. This included improving access to GPs, both within Whanganui and when travelling outside of Whanganui, particularly when there was an urgent need for gout medication. It was also noted that it would be helpful if gout records were national, so that it was easier to access medication when out of town. Cultural considerations were discussed, alongside the importance of providing appropriate gout-related education. Finally, the role of a gout programme was well supported; however, it was noted that they did not feel it was working in its current form.

Taken together, these findings suggest that there are varying levels of experiences and understanding of gout and that there is an important role for GPs and pharmacists around ensuring gout sufferers receive appropriate information around gout as a condition, what causes it, and how best to manage it. This needs to be re-visited on a regular basis, to ensure that patients understand the information or that they have received the information in the first place.

In addition, these findings suggest that there is strong support for a Gout Stop Programme among sufferers of gout; however, in its current form, it is not meeting the needs of these people. Primarily, there is a lack of awareness by gout sufferers that the programme actually exists. Therefore, it is important for GPs and Pharmacists to be made aware of the importance of referring patients who present at their services for gout. Within this, however, there is a need for more accurate and detailed information to be provided to patients, so that they are aware of exactly what they will receive while on the programme and how long these benefits will last.

Finally, there is strong support for the development of a gout group, which patients with a gout diagnosis could attend. This would provide people with additional emotional support, due to feeling that others in the group understand what they are going through, in addition to advice around how to manage different emerging issues.

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