New research reveals the truth about Shared Decision Making in HAE
‘The power of partnership: shared decision making in HAE’ was published by BioCryst in collaboration with HAE UK, and contains research and recommendations to improve the use of shared decision making for hereditary angioedema (HAE) patients.
Characterised by unpredictable attacks of painful swelling, HAE is a debilitating, lifelong condition which has an enormous impact on the lives of those living with it. Furthermore, the condition can worsen due to different triggers such as stress, hormones or age, meaning that patients needs often change as they travel through different life stages and circumstances. Because of this, it is critical that patients and their clinicians are able to agree and adapt their approach to treatment according to the individuals needs and life stage. This can be done through a process called shared decision making (SDM) which involves a patient and their clinician working together to come to a decision about the best course of treatment.
The Power of Partnership: shared decision making in HAE is a new report highlighting the importance of SDM in the management of HAE. Developed in partnership by BioCryst and HAEUK, the report is based on new primary insights from people living with HAE and heathcare professional’s (HCP’s) working in the field. It shines new light on the burden of the condition and the significant benefits of SDM being embedded throughout treatment pathways.
Key findings from the report include:
- 36% of people with HAE felt like the SDM process is not followed as it should be when determining treatment options
- 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
- A previous study has shown HAE patients have a 39% chance of being diagnosed with depression
- 26% of people with the disease were unfamiliar with the concept of shared decision making.
The findings from the research underpin anecdotal evidence that SDM is not being carried out consistently with all HAE patients, and it also digs into some of the reasons for this. Clinicians told us of a lack of consistent training and guidance in carrying out SDM, with workload pressures and staff turnover preventing them from building the necessary relationship with patients over time, leading to discontinuity of care.
Using the research, we carried out workshops with both patients and healthcare professionals to discuss the challenges and ideate solutions on how to address the barriers to consistent use of SDM. The recommendations are set out in the report and include developing bespoke materials to enable patients to prepare for their appointments, more in-depth training for clinicians treating HAE patients, and a recognition of the role of the nurse within the multidisciplinary team. BioCryst are now working with HAE UK to make some of these recommendations a reality, by developing patient resources and training for HCPs.
You can also look at and download the useful resources to help you keep track of your attacks so that you have a precise picture to share at your next clinical meeting. These three leaflets to support patients to record and provide information to their clinicians developed in partnership with HAEUK funded by BioCryst. Developed to support patients to record the information on the impact of their condition and treatments and provide this to their clinicians to support having an optimal consultation.
