Why aren’t doctors diagnosing Primary Aldosteronism?

The Primary Aldosteronism experts at Hudson Institute of Medical Research and Monash University first set out to determine how best to detect and treat this significant cause of hypertension, then they turned their attention to why it’s often not looked for as a diagnosis in the first place.

And they have a remarkable Belgian woman to thank for their efforts.

But let’s take a step back and find out what this condition is and why it is important.

Primary Aldosteronism (otherwise known as PA or Conn Syndrome)

• is the leading endocrine cause of hypertension (high blood pressure)
• carries a higher risk of stroke, heart attack, atrial fibrillation, and kidney failure
• can be caused by a unilateral aldosterone-producing adrenal tumour or by overproduction (or uncontrolled production) of aldosterone from both adrenal glands.

The first of these causes can be treated by surgery while the latter is treated with medications. However, the condition is frequently underdiagnosed so sufferers are unable to benefit from these treatments.

Aiming to doctors’ improve awareness & diagnosis of Primary Aldosteronism

Professor Jun Yang and her team at Hudson Institute created the Primary Aldosteronism Centre of Excellence (PACE) to study the condition and establish ways to improve awareness and diagnosis.

Thanks to a donation from the late Dr Marianne Leenaerts, the Belgian-born Co-Founder and Co-Director of the Primary Aldosteronism Foundation (USA), Prof Yang enlisted Monash University implementation expert Dr Katrina Long and her team to investigate the key barriers to PA detection and treatment.

Their study involved interviews with 38 GPs, nephrologists, endocrinologists and cardiologists from every state and territory in Australia, taking in urban and regional locations.

The study aimed to explore and understand the basis of this underdiagnosis and sub-optimal management, specifically from the perspective of the clinicians that are directly involved in the screening, diagnosis and management of PA across Australia.

Multiple barriers to diagnosis & treatment

“This study revealed multiple barriers as well as facilitators, across the diagnostic and treatment pathway for PA, and across diverse Australian contexts,” said first author, Dr Sandra Hakim.

“Key barriers included perceptions about PA patient profiles, where older and co-morbid populations are often not considered candidates for screening; substantial perceived complexity and burden associated with the PA diagnostic process that inhibits PA investigation from being initiated; and limited access to services that hinders the diagnostic cascade from proceeding, contributing to fragmented care and diagnostic delay.”

Prof Yang believes that because PA is underdiagnosed, it is also often inappropriately managed, despite the availability of targeted medical management, or possible surgical cure. 

“Patients can only benefit if they are diagnosed in the first place,” she said. “This study has highlighted multiple factors that influence doctors’ decision-making in primary aldosteronism screening, diagnosis and management.”

“These factors provide important guidance for the design of interventions to improve PA detection and care across diverse health sectors in Australia.” 

Dr Long added that, “PACE’s PA education forums, the Endocrine Hypertension Clinic in partnership with Monash Health, and work to update PA clinical guidelines provide significant steps to overcome these barriers, to improve PA detection and care.”