People of Maori and Pacific Island background have expressed frustration and regret after poor gout literacy and management allowed their preventable and curable “nuisance illness” to become a chronic and crippling disease.
A qualitative study of 10 Pasifika men who attended Westmead and Blacktown Hospitals for severe tophaceous gout revealed patients received little information about their disease or treatment upon diagnosis.
Only one got a timely referral to a rheumatologist and many felt dismissed by their GPs, they reported. The resulting trivialisation led patients to consider gout a “nuisance illness” and prevented drug adherence.
“In the words of one, ‘never paid much attention to it. I just thought I’d pop a few of these, a few of those, and be okay’,” the authors wrote in the International Journal of Rheumatic Diseases.
One patient managed his progressively worsening gout with symptomatic treatments alone and some of those who did receive allopurinol only took theirs during flare-ups rather than preventatively.
“When they realised that the allopurinol was ineffective for an acute attack, they reported stopping it altogether,” the authors wrote.
GP mismanagement was also an issue, with clinicians prescribing long-term corticosteroids and pain killers despite guidelines recommending urate-lowering treatments (ULT).
“Five participants had taken high-dose prednisone for extended periods and three were still taking it daily,” the authors noted.
One was taking up to 150 mg corticosteroids daily for 10 years, sourcing prescriptions from three different GPs who would say “you shouldn’t be taking this, but I’ll give you this script”, they reported. The patient suffered multiple osteoporotic vertebral fractions in 2016 and had been wheel-chair bound for three years at the time of interviewing as a result.
Another managed their worsening gout with indomethacin alone for 17 years because their doctor never gave them an alternative.
“Now, aged 38, he has been told that his kidneys might be failing due to its excessive use.”
“Given the availability and efficacy of modern ULT, this should have been preventable,” the authors wrote.
On top of these adverse effects, severe gout has destroyed all participants’ quality of life, forced seven to stop work, put financial strain on them and their families, impeded seven patients’ social lives, led to three relationship breakdowns and contributed to severe depression in two.
The osteoporotic patient lives on $100 a week after paying his rent and buying necessary medications from his Newstart allowance, the authors wrote.
“Not even enough to buy a bread. For the past 2 something years I’ve been living here very, very tightly. Now I eat Nutri-Grain. Nutri-Grain for dinner, Nutri-Grain for breakfast, Nutri-Grain for a lot,” he told them.
He spends almost all his time in his 3 x 3 m apartment, hardly ever sees friends or family and can’t get down stairs, the authors wrote.
“23 hours a day. It’s a prison. I got to get somebody to go do my shopping, or I starve… I nearly died a couple of times. There’s one time I had an attack, for a week. I had nothing, no medication. I OD’ed on Panadol, I took a whole box of Panadol in a couple of hours,” he told them.
Improving care and preventing severe disease
Patients told the study investigators that they wished they’d had clearer information, specialist access and proper treatment sooner.
“It’s just one of those things that of course you’re young and bullet proof. But, if someone had set me down like [my new doctor] did, and just explained to me exactly what the situation is in lay terms. Man, if I’d have had that conversation 30 years ago, brilliant,” one patient said.
The authors recommended patients see rheumatologists early in their disease course for diagnosis and a “comprehensive management plan”, while accessing help from gout-trained GPs, pharmacists and nurses.
“While the effect of an earlier referral has not yet been investigated in the literature — perhaps a focus for future research — it is important to note that almost all our participants felt they would have benefited from this extra level of surveillance,” they wrote.
Regarding nurses, a recent randomised trial found nurse-led care was patient-preferred over GP-care; resulted in better disease understanding, greater persistence on ULT and fewer flare-ups; and was cost-effective.
Nurse-led care could help improve patient engagement and decrease patient loss to follow-up, the authors noted.
Pharmacist-led care has also shown promise in New Zealand, with Gout Stop and Owning My Gout helping to improve treatment access for Māori and Pacific Islander people who were at greater risk of tophaceous erosive joint disease and adverse outcomes, they added.
“. . . we recommend a trial of a nurse-and pharmacist-led collaborative gout management program in the Western Sydney Local Health District targeting this particular high-risk group.”
If successful, it could “empower these individuals to take early ownership of their disease and ultimately prevent such devastating disease progression”, they concluded.