A national register of people with rheumatic fever is needed to help protect younger people missing out on vital treatment, senior clinicians say.
Young people with a history of rheumatic fever are falling off the recall register as they become independent and mobile, a specialist says. Photo: 123RF
The results of a four-year nationwide study have found recurrences of the illness are linked to people not keeping up with their medication, with adolescents and young adults most at risk.
A children's heart specialist at Starship Hospital said the problem is worse among Māori and Pasifika communities.
Associate professor Nigel Wilson said another problem is that younger people are falling off the recall register once they become independent.
"Around the country, each region has their registers so the nurses know who needs their penicillin that week or that day.
"That system doesn't work for adults because the registers are for children."
Professor Wilson said once a young person leaves that system, it is up to them to find a healthcare provider who can administer the injections.
Rheumatic fever is a serious illness that can lead to heart damage. It often starts with a sore throat caused by strep bacteria, and can cause swelling and pain in sufferers' hips, knees, ankles, elbows and wrists.
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Recurrences are treated with regular penicillin injections, about every 28 days, administered by a community nurse, district nurse or public health nurse.
Regular penicillin injections administered by a nurse are the treatment for recurrences of rheumatic fever. Photo: 123RF
Professor Wilson said once a young adult found a GP or other healthcare provider, it was not the provider's job to chase down patients the same way as they did with young children on a register.
"We have this very good relationship with a lot of nurses who go to schools, who go to homes and give the penicillin every 28 days."
He said if it was left for up to five or six weeks, the chance of a recurrence increased, and so did the risk of rheumatic heart disease.
"By and large there's a very low rate (of recurrence) in children. Only four percent of of children in the study time period - 2010 to 2014, were recurrent cases. All the rest were new cases of acute rheumatic fever.
"But once over the age of 21, recurrences in that age group...25 percent were not first episodes, they were recurrent episodes.
"Previous work in the last couple of years showed that engaging with health services is not always user-friendly. Health is not always a huge priority and so the adolescents and young adults make their own decisions."
Professor Wilson said cost and time were barriers.
"People are busy. Just making the appointment to have the injection can be a barrier."
He said the mobility of young people, who moved towns and regions in search of work and new lives, was also a problem for them keeping up with much-needed medication.
He said the results of the study showed where the emphasis was needed on improving outcomes.
"For over 10 years now, we've been saying to the ministry, having a national register would be very helpful so that if someone moves town, and turns up to a different accident and emergency department for example, then a light comes up on the patient information sheet that says they're on penicillin and should be getting an injection every 28 days."
Professor Wilson said it was rare to see new cases of rheumatic fever in non-Māori and Pasifika populations.
"It really is a problem for Māori and Pasifika, and so by having a very good secondary prophylaxis (antibiotic), you're decreasing the recurrences and therefore decreasing the long-term rheumatic heart disease and the consequences of that."