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What is the role of the clinical nurse specialist in optimising outcomes in hereditary angioedema?

Shared decision-making allows clinical nurse specialists to integrate patients’ preferences with clinical evidence
Posted 29 July 2024 - 09:52

Shared decision-making allows clinical nurse specialists to integrate patients’ preferences with clinical evidence

Long-term management of a rare condition

Hereditary angioedema (HAE) is a rare disorder characterised by recurrent episodes of severe and unpredictable swelling in various body parts, often leading to significant morbidity and mortality if not managed effectively.

In my experience, I have seen that HAE can have a significant impact on patients' quality of life (QOL) due to the unpredictable nature of the condition. In some cases this can include a profound impact on patients’ physical, emotional, social, and financial well-being. I believe this highlights the importance of comprehensive management approaches that address the acute and chronic aspects of the condition.

HAE is a genetic disease, with a 50:50 chance of a parent passing it on to the next generation. In the majority of cases, people with HAE start to experience symptoms by age 13 and often worsen after puberty. For some, HAE can start in early childhood (Sinnathamby et al 2023).

Because people live with HAE for decades, a long-term partnership between patients and medical professionals is needed to optimise outcomes and improve experience. The role of a clinical nurse specialist is crucial to this process.

Clinical nurse specialist consulting a patient. Picture: iStock

The power of partnership

I began caring for patients with HAE during a time when the primary management goals were preventing death and alleviating unbearable pain. I’ve seen first-hand the challenges of living with this condition, and its impact on patients and their families. However, I have also witnessed the improvements that can be achieved through long-term partnerships between healthcare providers and patients, as well as through shared decision-making (SDM).

SDM is a specific process by which the patient and their medical team work together to balance individual needs and beliefs with clinical evidence, in order to decide the best course of treatment. SDM can help patients remain actively engaged in their treatment. It helps individuals and families feel heard and retain a sense of autonomy (NHS England 2022).

For specialist nurses and immunologists, SDM helps ensure the treatment decisions they make reflect their patients’ ambitions and needs, integrating patient values and preferences with clinical evidence. This approach is particularly important in conditions like HAE, where treatment needs to be personalised and adjusted over time as people enter different stages of life.

I have recently supported the development of a new report called The Power of Partnership: Shared decision making in HAE. This report is based on detailed work with HCPs and those living with HAE. It also underscores the challenges of the condition and the importance of getting treatment right:

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

While SDM is known to optimise outcomes, the new report points to challenges in the consistent implementation of SDM across the UK:

  • 36% of people with HAE feel like SDM is not embedded during consultations when determining treatment options
  • 26% of people with the disease are unfamiliar with the concept of shared decision making

This inconsistency poses a problem because it suggests many patients may not be receiving the optimal treatment tailored for their needs, and that many individuals with HAE are unaware of therapies and choices that may help them to manage their condition.

Example of a hereditary angioedema. Picture: iStock

The vital role of the nurse

Immunology nurse specialists play a crucial role in ensuring the consistent integration of SDM in clinical practice. We build trusted, long-term relationships with those who are in our care, which can be leveraged to better understand their values, needs, and beliefs for treatment.

Our relationship with our patients allows us to educate them on new treatment opportunities and the value of engagement in decisions. This is particularly important in long-term patients – those individuals that may have healthcare-fatigue from regular medical appointments.

Some of those living with HAE for many years may have become used to the challenges of the condition and disinterested in learning about new treatments or ways to manage the condition. As a nurse specialist I can significantly contribute to improving health literacy and facilitate effective shared decision-making between healthcare professionals and patients.

Our relationship with patients also gives us the platform to ease fears patients might have about changing treatment. If they have been using a specific treatment for a long time, they may be nervous about the negative effects of changing. SDM is built on successful communication between HCPs and patients. Breaking down the barriers to effective communication is an important part of the process, particularly for those who are not native English speakers.

Making the most of the latest tools

There are many tools that can support the SDM process.

Patient-reported outcome measures (PROMs) are standardised tools used to assess patients' perspectives on their health status, symptoms, and quality of life. In the context of HAE, PROMs offer valuable insights into the impact of the condition on patients' daily lives and well-being, helping healthcare providers tailor treatment strategies and support services to address patients' specific needs.

By incorporating PROMs into routine clinical practice, Immunology Nurse specialists are able to empower patients to advocate for their own health and contribute to the ongoing improvement of HAE management strategies.

New HAE management tools for nurse-led clinics

Our centre has developed a questionnaire and incorporated angioedema control test (AECT) questions and an attack and treatment diary to aid in SDM process in our HAE clinic. The structured questions help patients accurately track their treatments, the frequency and location of attacks, triggers and severity, and emotional well-being. The AECT provides a standardised method for patients to self-assess their disease control over time, allowing healthcare providers to monitor treatment outcomes and adjust management strategies accordingly. This material is now available on the HAEUK website.

These resources are particularly useful in nurse-led HAE clinics. Nurses can assist patients in completing the questionnaires to ensure accurate information. This comprehensive data facilitates better conversation and support personalised approach during consultation.

Health care professionals, in particular nurse specialist, play a key role in enabling HAE patients to experience personalised care. It is important for nurses to be able to provide standardised care. To further support this, BSI CIPN recently published the first immunology nursing competency framework which outlines the breadth of the immunology nurse’s role. It covers the core skills and knowledge expected of an immunology nurse working towards expert practice, from newly entering the speciality to undertaking nurse-led clinics. The development of competency framework is aimed towards improving outcomes, experiences and optimising use of nursing resources. The framework is downloadable here.

Better is possible

SDM can optimise outcomes and experience in the management of HAE (Banerji et al 2021). Immunology specialist nurses are vital in the integration of the SDM process throughout every stage of HAE patient pathway. Using the latest tools and techniques Immunology nurse specialists have a crucial part to play in empowering patients so that they understand and take an active role in SDM. If we take forward the principles of trust and shared decision making, the benefits to the patients in our care can be significant.

Lorena Lorenzo, lead immunology clinical nurse specialist at Bart's Health NHS Trust, London

References

Date of preparation: July 2024
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