Cystic fibrosis

CF doctors will need to become “super generalists”

Adult CF doctors will need to be come “super generalists” if they are to effectively manage the complexities of the disease that comes with an increasing life expectancy, experts have said.

In a session held today on Growing old with CF Nicholas Simmonds from the Royal Brompton in London, UK, said recent figures from a US cohort showed that a child with CF born in 2010 could live to 56 (if mortality rate stays the same).

But with an increasing life expectancy doctors were now seeing changing pulmonary pathogens, more pulmonary complications and extra pulmonary CF-related diseases such as diabetes, osteoporosis, kidney disease, liver disease, bowel cancer and depression.

Patients’ needs are going to be multiple, diverse and complex and need the input of an expert multidisciplinary team, he warned.

“It is a paradigm shift, it’s a chronic disease and care needs to be delivered by a team effectively,” he added.

“We are super specialists but in some ways I think we are going to have to become super generalists because there’s an array of problems and it’s important to recognise that and make sure patients are managed effectively,” he said.

“Other non-CF medications may need to be introduced and it’s important to consider the impact that might have on CF medications,” he explained.

Scott Bell from The Prince Charles Hospital in Brisbane agreed that we were seeing new challenges that have either emerged, were emerging, and those that are just starting to come over the horizon.

“This is a disease which is not just a lung disease and that has major implications for our patients who will need to cope with multiple chronic diseases,” he told delegates.

Even patients who are doing well have the significant challenges of advanced pulmonary disease, he said.

This also has implications for the workforce, and teams would need to start to think about sustainability and succession planning as they reached retirement age.

The paradox was not just increasing numbers of patients but increasing complexities, he said.

“The complexity means you need an experienced workforce, not just a medical workforce,” he said.

“And yet we are not going to cope unless we change the model of care…it’s difficult to know how we’re going to do that without something novel.”

Part of the solution could be educating generalists, particularly in areas where there is a decentralization of the population.

“At the same time those clinicians are often overwhelmed by an enormous range of other medical problems which numerically are completely overwhelming compared to the number of CF patients.”

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