The mental health of patients with Hereditary Angioedema (HAE)

Abstract

Background: Hereditary Angioedema (HAE) is caused by a deficiency in the C1 inhibitor triggering episodes of edema. These attacks are life threatening due to inflammation of the larynx. HAE effects up to 1 in 100,000 so little is known about the psychological impact. The study was designed to investigate how living with HAE impacts on the patient’s mental health. Methods: Patients will be over 18 with a diagnosis of HAE and living in the UK, they will be recruited through HAE UK by an online survey. A mixed measures design will be used, incorporating the generalised anxiety disorder assessment (GAD-7) and the Depression Scale (CES-D10). Participants will be invited to share an account of any information they perceive as relevant; a thematic analysis will analyse the accounts. Thirty participants are anticipated; of these 5 with the poorest mental and 5 who have coped the best will be invited for interview, which will be analysed through descriptive phenomenology. Expected results: The questionnaire results are expected to reveal that 40% of the participants are experiencing depression and high levels of anxiety due to attacks, especially of the larynx. Those HAE patients who are able to control attacks may report low levels. The interviews might reveal that patients who experience numerous and severe attacks will report poorer mental health than those who can control their attacks. Current stage of work: awaiting ethics approval Discussion: There might be a link between patients with HAE and mental health which needs further examination.