health & science

Why we need a rheumatic fever register

People with rheumatic fever are falling through the cracks of a health system not catering to the living circumstances of the majority of sufferers.

Without ongoing treatment the chances of getting ill again are high, and the outcome can be life-threatening.

A study released today in the Australian and New Zealand Journal of Public Health has highlighted treatment is sometimes hard to access, patients feel the care is sometimes racist and the service is not targeted at adolescents.

It makes a number of recommendations including reiterating the need for a central register of rheumatic fever patients.

While rheumatic fever mainly effects Māori and Pacific children between five and 14 years old, there is no evidence of a genetic predisposition. It is thought inequities which lead to deprivation play a role, such as poor home heating and overcrowding. These same inequities can impact access to treatment.

"The injections are really the only way to stop further rheumatic heart deterioration.”

Starting as a sore throat, the infection can eventually damage the heart valves. In New Zealand, rheumatic fever reduces life expectancy by approximately 15 years.

Lead author, the University of Auckland's Dr Anneka Anderson, said while most people knew the link between “strep throat” and rheumatic fever, most didn’t know the treatment which is needed after a diagnosis.

Once known, monthly injections of penicillin are needed for at least 10 years. The injections stop infections and stop any recurrence of rheumatic fever. Each time a person gets rheumatic fever there’s a chance of heart damage.

Without the shots, the risk of catching rheumatic fever is as high as 75 percent among previous sufferers who get a subsequent Group A Streptococcus infection.

Anderson said monthly injections were crucial and the most effective defence against another infection.

“The reality is if you have light or no heart damage as a result of rheumatic fever you could potentially go on to live quite a long and healthy life.

“Unfortunately, as you start getting moderate to severe heart damage, that's going to be impeded quite significantly. The injections are really the only way to stop further rheumatic heart deterioration.”

The necessary shots are painful.

“They’re intramuscular injections, they penetrate right down to the deep muscles. That’s quite painful. The serum they put into the injections is quite thick, it’s gluggy. Sometimes it’s quite hard to push it through.”

Anderson wanted to look at the experience of people receiving treatment to help understand why on average 50 patients a year end up in hospital again with rheumatic fever.

Three main themes emerged from the study of 113 participants, 80 of whom were patients under 40, the remainder being health professionals.

“The overarching theme we had was there was a mismatch between the context of people's lives and health needs,” said Anderson

The system set-up to administer the ongoing treatment often doesn’t take into account the living situations and the barriers to getting a shot every month for years on end. This system differed by region over New Zealand’s 20 District Health Boards.

School-aged children often received their monthly injections at school, from a visiting nurse. Older patients were sometimes required to travel to a clinic, or in some cases a nurse would visit their home or workplace.

The study notes assumptions about treatment did not always match to the complex lives of patients. DHBs’ approach to treatment seemed to be on the assumption of a permanent address.

Some families shifted regularly, some lived in cars. Some don’t have access to transport to a hospital clinic. When they did, the wait for treatment could be long.

One nurse interviewed as part of the study talked of how a school leaver who needed injections was working hours which don’t fit into normal hours of work: “He can start at 6:00 in the morning and get home at 9:00 at night.”

The fragmented approach to treatment between DHBs also posed a problem when people shifted between regions. 

For Anderson this is a compelling reason for a rheumatic fever register. She believes a register would mean fewer patients lost to the system. It's a relatively low-cost measure shown to improve outcomes for other conditions, such as f dialysis in New Zealand and Australia and HIV/AIDS and hepatitis C overseas.

“It's probably the biggest gap and hindrance we have to a successful rheumatic fever service. Knowing numbers, who to target, where people are at, would just be invaluable."

Many of the study participants reported feeling their treatment lacked respect, including being called “coconuts” or being treated differently than patients who didn’t have brown skin.

At other times, the handling of patients was felt to be unnecessarily rough or lacking cultural sensitivity.

While some DHB’s services used the same nurse to deliver treatment from childhood to adulthood others didn’t.

“Once you've left school or once you've reached a certain age you are deemed no longer a child, you're an adult and you have to go into clinics for injections. That was a very abrupt shift for a lot of our youth because we're talking about a day or two and you've gone from one system to another with very little transitionary adjustment. Those models didn't work so well.”

“It’s still a mystery to me why we don’t have a national register.”

Otago University’s Professor Michael Baker is leading a three-year project aimed at preventing and controlling rheumatic fever.

He was not involved in this study but said rheumatic fever had disappeared in most high-income countries except for Māori and Pacific people in New Zealand and Aboriginal people in Australia.

“We’re getting 150 to 200 cases of rheumatic fever a year and many will progress to rheumatic heart disease.”

At one point the estimated direct cost to the country was $10m a year, however, Baker thinks this underestimates the true cost of the disease, including a loss of employment.

Baker said the study published today reinforced a call for a national register of all who had rheumatic fever.

“Many of us have been asking for this for a very long time, probably the best part of two decades. It’s still a mystery to me why we don’t have a national register.”

“Otherwise we really are condemning large numbers of Māori and Pacific children to recurrent rheumatic fever and getting rheumatic heart disease and actually quite seriously damaging life chances.”

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