How nurses can revolutionise the ‘doctor says’ and ‘patient does’ approach to HAE | Nursing Times

Disclaimer: This article was sponsored by BioCryst Pharmaceuticals

Nurses have a crucial role to play in this process, and those working with rare diseases such as hereditary angioedema (HAE) can really lead the way in optimising care.

HAE is a rare but potentially fatal condition that affects hundreds of people and families across the UK. An inherited genetic disease, HAE too often lays a significant burden on patients. Many will face significant stress, anxiety and a worry about being able to cope with unpredictable and agonising attacks. Rare conditions like HAE are often misunderstood by non-specialist healthcare providers while patients will often have a high level of understanding of their condition. Without a high level of communication this can contribute to a vicious cycle of negative effects.

The traditional approach to the treatment of HAE is based on a paternalistic relationship between the patient and their doctor. The doctor knows best, and the patient does what they are told. But there is evidence that if the beliefs, preferences and desires of patients are built into treatment plans, and adapted to meet changing requirements over time, then the experience and outcomes of people with HAE are improved.

I’ve recently been working with the team behind a new report called The Power of Partnership: Shared Decision Making in HAE. The report is based on detailed work with health professionals and people living with HAE. It underscores the challenges of living with the condition and the importance of getting treatment right. Crucially, the report also points to solutions and how the management of HAE can be improved.

Some of the key challenges faced by patients highlighted in the report include:

• 32% of people with HAE listed unpredictability of attacks as the biggest challenge of living with the disease;
• Because of HAE 26% of respondents felt coping with everyday life was a challenge;
• HAE patients have a 39% chance of being diagnosed with depression.

The Power of Partnership report shows that shared decision making can ensure the needs of patients are being met. Shared decision making is more than just a conversation about options for treatment. It is a long-term collaborative process that integrates patient’s values and preferences with clinical evidence, allowing a health professional and patient to reach a joint decision about care. 

Successful shared decision making is based on openness and trust. This is particularly important in conditions like HAE, where treatment needs to be personalised and adjusted over time. For example, someone with HAE may have different requirements if they take on a new job or if they become a parent. Their treatment should reflect and facilitate this. As nurses we are fortunate to have a variety of touch points with those people in our care, giving us the opportunity to build relationships and trust with patients in a different way than doctors do.

Nurses often see patients in slightly less formal settings than doctors. For example, in any of our specialist clinics or the less formal ways patients are invited to get in touch with us, I’ve noticed that some of my patients seem more willing to confide in me outside of the traditional consultation setting. This allows me to take a holistic view of the people in my care, getting to know them and looking past the disease. Often symptoms are just one factor. Considering how treatment options impact a patient’s opportunities at different stages of their life is equally important. For one patient reducing the number of attacks may be the biggest priority, whereas another may be more concerned about ease of treatment.

As nurses, we should be inquisitive and use every opportunity available to understand more about what our patients need and to help them understand more about the options available. These varied interactions give us the opportunity to build trust, understand the subtleties of patient needs and help them to better engage in shared decision making.

Using shared decision making may mean challenging long-established relationships between patients and health professionals and approaching appointments with the understanding that patients may not want the expected treatment option. If this process improves patient experience, then we should embrace it.

I’ve seen the benefits this approach can yield. Now a greater understanding of the role of shared decision making and consistent application around the UK is needed.

The Power of Partnership report points to significant variation in usage of shared decision making across England. The new research shows that 26% of people with HAE are unfamiliar with the concept of shared decision making. A further 36% feel like the shared decision-making process is not followed as it should be when determining treatment options.

This is a problem because it suggests many patients may not be receiving the optimal treatment for them, and that many people with HAE are unaware of therapies and choices which may help to better manage their condition.

The ideal state for all patients is to be completely symptom free, but this is regretfully not always achievable for people with HAE. What is achievable is a shared vision between patients and health professional, with mutual respect and a joint understanding of how HAE can be managed. This includes possible changes in medication and support as the patient’s life changes, facilitated by their specialist team.  If we take forward the principles of trust and shared decision making, the benefits to the patients in our care can be significant.

Peter Pimblett is immunology specialist nurse, Manchester Royal Infirmary, Manchester University NHS Foundation Trust