A Waikato Hospital study is providing new insight into what matters most to people with rheumatic heart disease when they face one of the biggest decisions of their lives — choosing a replacement heart valve.
Researchers from Waikato Hospital’s cardiothoracic department examined the experiences of patients who had undergone heart valve replacement surgery, looking at how people made their decisions and what support they needed before and after their operations.
The decision can have lifelong consequences.
Patients may be offered a mechanical valve, which can potentially last for life but generally requires ongoing anticoagulation or blood-thinning medication.
Alternatively, they may receive a tissue valve, which does not usually require lifelong anticoagulation but may eventually deteriorate and require another operation.
The study found there was no single factor determining what patients considered the right choice.
Some placed greater importance on avoiding long-term medication, while others wanted to minimise the possibility of undergoing another major heart operation later in life.
Advice from trusted clinicians was particularly influential, with surgeons and cardiologists playing a central role in helping patients navigate the risks and benefits.
Encouragingly, most of those surveyed felt supported through the decision-making process and indicated they would make the same valve choice again.
Surgery is only the beginning
However, the research also identified significant opportunities to strengthen care once patients leave the operating theatre.
Around one-third of patients reported they had not seen a cardiologist following surgery, while nearly half had not accessed dental care.
Dental care is particularly important for people with heart valve disease because oral infections can potentially contribute to serious infections involving the heart and replacement valves.
Researchers also identified a need to strengthen patients’ understanding of anticoagulation medicines, monitoring requirements and long-term follow-up.
Those findings underline a wider challenge for people living with rheumatic heart disease, particularly patients in rural and higher-deprivation communities, where accessing specialist appointments, monitoring and dental services can be more difficult.
The study suggests successful heart surgery therefore cannot be viewed as the end of treatment.
For many patients, valve replacement begins a lifelong journey involving medication, monitoring, specialist care and maintaining other aspects of their health.
Better information for patients and whānau
The findings are already being used to improve the way patients and their families are supported.
Researchers are developing a multilingual digital app designed to complement discussions between patients, whānau and clinical teams.
The tool is intended to help people understand their valve options before appointments, revisit important information afterwards and find support when new questions emerge during their long-term care.
Senior author and principal investigator Associate Professor Nishith Patel, a consultant cardiothoracic surgeon, says choosing a replacement valve is highly personal and the research provides an evidence base for improving support both around the time of surgery and in the years afterwards.
The research also reinforces the importance of putting patients and whānau at the centre of complicated medical decisions.
A mechanical valve may be the right choice for one person, while avoiding lifelong medication may matter more to another.
The challenge for the health system is ensuring people have understandable information, trusted clinical guidance and the ongoing healthcare access needed to make their choice work over the long term.
For patients living with rheumatic heart disease, the operation may replace the valve — but good outcomes depend on supporting the person and their whānau long after they leave hospital.
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