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Living with Marfan syndrome II. Medication adherence and physical activity modification
1Department of Medicine, Center for Developmental and Health Genetics, Pennsylvania State University, University Park, PA 16802, USA. kfp1@psu.edu
Adults with Marfan syndrome generally adhere to medication and physical activity guidelines. However, perceptions of necessity and condition impact adherence, highlighting the need for tailored genetic counseling.
Area of Science:
- Cardiology
- Genetics
- Psychology
Background:
- Marfan syndrome is a genetic disorder affecting connective tissue.
- Management involves medication and lifestyle modifications, including physical activity.
- Understanding patient perceptions is crucial for adherence.
Purpose of the Study:
- To investigate perceptions and adherence to medication and physical activity guidelines in adults with Marfan syndrome.
- To identify factors influencing adherence to treatment recommendations.
- To inform genetic counseling strategies for Marfan syndrome patients.
Main Methods:
- Survey of 174 adults with Marfan syndrome.
- Assessed adherence to beta- and Ca2+-channel blockers.
- Evaluated physical activity choices and perceptions of Marfan syndrome.
Main Results:
- Over 80% reported good adherence to prescribed beta- and Ca2+-channel blockers.
- Cardiovascular symptoms and fatigue correlated positively with medication use.
- Physical activity modification was linked to perceiving Marfan syndrome as having negative life consequences.
- Beliefs about medication necessity were associated with regimen duration, type, and perceived controllability.
Conclusions:
- Adults with Marfan syndrome show high adherence but variable perceptions of medication necessity.
- Physical activity modifications reflect perceived condition impact.
- Genetic counseling should address patient beliefs regarding medication and exercise for improved coping and adherence.
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