Table 2 Themes, sub-themes and illustrative quotes

Gout interventions guided by Pacific frameworks and research

Name of intervention

“There are negative connotations of the word ‘coconut’. It may be hard to unwrap the labels around coconut. It might be better to use ‘niu’. Could we come up with an acronym with those three letters?” Participant 1, PPHAG member

Nature of intervention

”[The] coconut [NIU] intervention– outside is really hard and [represents] the challenges; break it open and it has the nourishment [gout medication] and all the experiences we’ve got; the liquid is the sweet that we want to go to [life without gout flares].” Participant 10, PPHAG member

Lack of Pacific data

”There is a lack of data on Pacific gout and pushing this project is the first start. So many other data we use as second hand, but first-hand data should be by Pacific for Pacific. It is already happening but not in the most co-ordinated way.” Participant 5, PPHAG member

Multifaceted/multi-layered approach

Education about gout

”We need to promote gout heavily in community using billboards, social media, posters, interviews, church, big Pacific events to increase awareness.” Participant 2, PPHAG member

Education about genetic predisposition

”Studies have shown that we [Pacific] have a genetic predisposition to getting gout.” Participant 14, PPBRN member

Education to reduce stigma

”[We need to] find ways of reducing any stigma about having gout… sharing family members’ stories of how it impacts on family, work… once everyone understands this will reduce the stigma.” Participant 11, PPHAG member

Education about herbal remedies

“In my experience people might try herbal remedies but by the time they present to us [doctors], they have severe symptoms. They can’t cope with the pain. These alternatives haven’t worked but instead has increased the risk.” Participant 15, PPBRN member

Education via social media

“A Facebook group page could be used to provide up to date gout information/promotions, provide a safe forum for questions to be answered by the members or experts, and also be able to celebrate the success stories and achievements… the participants could be sourced from current and long-term patients and families of patients and clinical experts (Pacific doctors / nurses)” Participant 4, PPHAG member

Education about allopurinol titration

“Some of the research that we are seeing is that when Pacific gout patients do go into the clinic, they are not receiving optimum titration” Participant 14, PPBRN member

Access to appointments

“People with gout who can’t access healthcare at the right times such as shift-work. That must be a huge factor for not getting care.” Participant 6, PPHAG member

Financial barrier to access

“It depends on the clinic they are at but low-cost clinics are $10 or $19 [consultation fee]. If it’s just gout, the script charge is $5 for one prescription, and they need this four times a year. Pacific people however have lots of other conditions that need prescriptions and so this adds up.” Participant 15, PPBRN member

Pharmacists may provide one-stop-shop

“Having a person that can deal specifically with gout– follows through with the process with the community. Sometimes it may take days or week to see a doctor and having another person to see you would be great. The doctor could put the patient in touch with them.” Participant 2, PPHAG member

Monitoring and testing could be done in the community

“For monitoring of gout and testing, we could consider options that cater to the community’s needs like at the supermarket you could have a test at a mobile van and a nurse could visit patients at their house if needed after.” Participant 4, PPHAG member

“I know that we rely on doing blood tests at the lab, but I am not aware of point-of-care testing in primary care clinics… at this stage it’s the lab tests.” Participant 16, PPBRN member

Maintaining Pacific gout patients on ULT long-term

“Attach the education to a community event and have teams of doctors, nurses, pharmacists, educators wearing gout t-shirts and they can walk and talk and bring it to the community level, make it a normal conversation at the community level.” Participant 10, PPHAG member

Buddy and family support system

“I think to keep them taking the medication and seeing a GP they should have a buddy in your family to go with you to appointments and monitor medication use. This will also address some of the translation issues.” Participant 11, PPHAG member

“Support for the whole family so the family members are also aware of what gout is and the importance of taking medication daily as a preventative measure.” Participant 9, PPHAG member

Pacific Gout Champions

“It’s so good to hear from Pacific doctors and their experience with gout.” Participant 1, PPHAG member

“This can be Pacific led - Pacific doctors, nurses, patients…and also using high profile Pasifika peoples as ‘Gout & About’ Ambassadors.” Participant 5, PPHAG member