An Online Psychological Intervention for Adults with HAE v.1
Research type
Research Study
Full title
An Online Acceptance and Commitment Therapy Intervention for Adults with Hereditary Angioedema: A Feasibility Study
IRAS ID
339786
Contact name
Rachel McGranaghan
Contact email
Sponsor organisation
University of Surrey, Head of Assurance, RII
Duration of Study in the UK
1 years, 1 months, 2 days
Research summary
Summary of Research: Hereditary Angioedema (HAE) is a rare and potentially life-threatening disorder characterised by recurrent episodes of severe swelling, most commonly in the limbs, face, intestinal tract and airway. From the limited research focusing on the lived experiences of adults with HAE, individuals report worries about future attacks and disruption to their life, as well as symptoms of anxiety and depression. Literature also suggests that increased levels of stress may be a contributing factor to triggers of oedema (swelling) attacks. It is well established that a variety of long-term conditions are associated with an increased risk of psychological problems. Acceptance and Commitment Therapy (ACT) is a psychological intervention that encourages the acceptance of negative thoughts, feelings and symptoms through skills such as mindfulness, cognitive defusion, and setting value-based goals, with aims to increase psychological flexibility. ACT is increasingly being utilised in the management of a wide range of long-term conditions and has been shown to improve quality of life and reduce psychological distress in these populations. To our knowledge, there is currently no psychological intervention specifically adapted for individuals living with HAE. This proposed study aims to evaluate the suitability and feasibility of a two-week online ACT intervention designed to improve psychological flexibility and values-based behaviours in adults with HAE.
Summary of Results: Hereditary Angioedema (HAE) is a rare disorder that causes unpredictable, severe and potentially life-threatening swelling attacks. HAE can profoundly impact daily life; limiting social engagement and contributing to ongoing fear of future episodes as well as guilt about passing the condition onto their children. Although medical treatments exist to manage the physical symptoms, very little psychological support has been developed specifically for people living with HAE. This study explored whether an online psychological intervention based on Acceptance and Commitment Therapy (ACT) could be a helpful and practical way to support adults living with HAE.
ACT is a type of therapy that helps people manage difficult thoughts and feelings while focusing on what matters most to them. This study’s intervention consisted of four weeks of pre recorded videos and guided mindfulness ACT exercises. Fourteen adults with HAE took part, and eight of these participants fully completed questionnaires before and after the intervention, and again one month later. Participants provided feedback about their experience.
The study found that although participants liked the content of the intervention, many struggled to complete all the sessions. Only eight participants finished the post intervention and follow up questionnaires, and engagement with the videos decreased over time. The questionnaires showed little reliable improvement in psychological wellbeing. This may be because many participants did not complete enough of the programme to benefit fully.
These findings suggest that while ACT based content may be helpful for people with HAE, the current online format was not easy for participants to follow. Future versions of the intervention may need to be shorter, more flexible, or have some face to face elements to help people stay engaged. This study highlights the importance of developing psychological support that fits the unique needs and challenges of people living with HAE.REC name
West Midlands - Black Country Research Ethics Committee
REC reference
24/WM/0162
Date of REC Opinion
5 Dec 2024
REC opinion
Further Information Favourable Opinion