Physical activity, exercise and experiences among adults with rare, hereditary connective tissue disorders with aortic pathology (HTAD)
The study aims to increase knowledge about physical activity and exercise among adults with HTAD in Norway and Sweden.
Project type
Cross-sectional study – questionnaire survey in Norway and Sweden
Status
Ongoing
Principal investigator
Katrine Bostrøm, PhD
Co-investigators and collaborators
Åsa Cider, PhD, and Linda Ashman Kröönström, PhD
Sahlgrenska University Hospital, Gothenburg, Sweden
Reference group
A reference group has been established in each country with participants from relevant patient organizations in Sweden and Norway.
Aim and relevance
The study aims to increase knowledge about physical activity and exercise among adults with HTAD in Norway and Sweden. Currently, little is known about their activity levels, exercise habits, or the barriers they face in everyday life.
The results will support better follow-up and more precise recommendations for adapted exercise and provide a foundation for future research on how exercise can be carried out safely and effectively in this patient group.
Background
Living with HTAD is associated with an increased risk of serious cardiovascular events and requires lifelong follow-up. Many patients are advised to limit activities that increase heart rate and blood pressure, which makes it challenging to balance health benefits and safety during exercise.
There is limited knowledge about which activities patients engage in, the advice they receive in primary care, and how they are followed up in the healthcare services. This study therefore examines physical activity, exercise habits and patient experiences in Norway and Sweden to strengthen clinical practice and support future studies on adapted exercise.
Method and target group
The study is a cross-sectional survey of adults with HTAD in Norway and Sweden.
Data are collected through a digital questionnaire available in Norwegian and Swedish, distributed in collaboration with the Marfan associations in Norway and Sweden.
The survey covers:
- level of physical activity and regular exercise
- barriers to being active
- need for support and exercise guidance
- physical fitness, fatigue and pain
- work and social participation, mental health and quality of life
- access to physiotherapy and adapted rehabilitation services