Managing slow but deadly disease a tough task
Busy western Sydney GP Dr Christopher An understands better than most that simply telling a patient they have potentially deadly hepatitis B does not mean it will be effectively managed.
After 12 years of experience working in immigrant-heavy Bankstown and Cabramatta, Dr An is all too familiar with tendency of patients diagnosed with chronic hepatitis B to let slip what can come to be seen as an unnecessary or onerous system of monitoring and treatment.
The GP diagnoses a fresh case every two to three weeks, and currently has about 100 hepatitis B patients on his books. Typically, each should come in twice a year for blood tests to monitor the development of the disease.
The unfortunate reality, though, is that “how many that come back to see me to follow up is very low,” he told Australian Medicine. “A lot of patients get fatigued with the follow-ups and just drop out.”
Dr An believes that the best chance of improving patient compliance lies in empowering them – fully explaining the disease and its progress and sharing with them responsibility for its monitoring and management.
“It is very, very important that the patient is empowered,” he said.
But in a busy general practice where time with each patient is limited, this can be very difficult to achieve.
Ideally, Dr An said, he would talk each patient carefully through the entire journey of hepatitis B. But in practice, “it is very difficult in my rooms to try to educate a patient about the entire cause and management of hepatitis B”.
Adding to the difficulty is the fact that many of his patients with hepatitis B are of Asian background (usually Chinese, Vietnamese, Cambodian or Laotian), presenting linguistic and cultural barriers to treatment.
Which is why he is keen to give PATH B, an on-line guide for patients and health professionals to track the management and progress of hepatitis B, a go.
The program, developed in Europe with support from pharmaceutical company Bristol-Myers Squibb and adapted for Australia in consultation with Hepatitis Australia, provides comprehensive information about the disease as well as tools to manage it, all presented in three key languages – English, traditional Chinese and Vietnamese.
In addition to a detailed explanation about the disease, what it does and how it is transmitted, PATH B also includes an online diary where patients can record test results, medical appointments and a tool to track the progress of their treatment.
Hepatitis Australia Chief Executive Officer Helen Tyrrell told Australian Medicine the fact that PATH B was available in Chinese and Vietnamese as well as English was crucial given the prevalence of the disease among migrants from south-east Asia.
Ms Tyrrell said of the 218,000 Australians with chronic hepatitis B, about 35,000 were from China and 20,000 from Vietnam.
She said in south-east Asia, which was the “global epicentre” of the disease, the blood-borne disease was most commonly transmitted from mothers to their children, and its diagnosis and treatment was hampered by stigma and cultural differences.
As a result, Hepatitis Australia estimates that about half of all adults with hepatitis B are undiagnosed, and only a fifth of those who need treatment are getting it.
The nature of the illness also militates against regular monitoring and treatment. The slow moving nature of the disease, and the adaptability of the liver, means the infected can go for years without symptoms until it escalates. In up to a quarter of all cases it can result in serious conditions such as cirrhosis, liver cancer and liver failure.
“What we have seen as a result is chronic hepatitis B going unchecked, unmanaged and untreated within Australia,” Ms Tyrrell said. “We hope a resource like PATH B will empower those living with [the disease] and their families, arming them with the knowledge and understanding they need to better manage their health and tackle hepatitis B.”