The influence of stress and lifestyle in hereditary angioedema
- Conditions
- Hereditary angioedemaHuman Genetics and Inherited Disorders - Other human genetics and inherited disordersSkin - Other skin conditionsInflammatory and Immune System - Other inflammatory or immune system disorders
- Registration Number
- ACTRN12621000473864
- Lead Sponsor
- niversity of Auckland
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Completed
- Sex
- All
- Target Recruitment
- 3
Inclusion criteria – people who:
1.Have been diagnosed by a Clinical Immunologist, to be suffering from hereditary angioedema which does not respond to antihistamine or corticosteroid treatment (determined by family history, presence of symptoms of angioedema, low C1 inhibitor level or function or genetic studies)
2.Have access to on-demand medication
3.Are aged 18 and above
4.Are currently and for the duration of the study, residing in New Zealand
5.Have access to a computer and internet connection to access the online intervention
Exclusion criteria – people who:
1.Are unable to comprehend the information sheet and the consent form or unable to give consent.
2.Are participating in another clinical trial
3.Are engaged in another lifestyle intervention, such as working with a health professional on making lifestyle changes
4.Have acquired angioedema
5.Do not have access to on-demand medication
6.Are aged 17 or less
7.Reside outside of New Zealand or planning to during the study
8.Do not have access to a computer and / or do not have access to an internet connection
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method ifestyle quality score (comprising Firstbeat Lifestyle Assessment overall lifestyle assessment score, stress and recovery balance score, restorative effect of sleep score and health effects of physical activity score)[Week 1, Week 13 and follow-up at week 25];Quality of life measured by the HAE Quality of Life Questionnaire (AE-QoL)[Week 1, Week 13 and follow-up at week 25];Swelling attack activity measured by the Angioedema Activity Score Questionnaire (AAS)[Week 1, Week 13 and follow-up at week 25]
- Secondary Outcome Measures
Name Time Method