title: Living with Marfan syndrome II. Medication adherence and physical activity modification.
abstract: We investigated the perceptions of and adherence to medication and physical activity guidelines in 174 adults with Marfan syndrome. Over 80% of those prescribed beta- and Ca2+-channel blockade reportedly adhere well to their medication regimen. The presence of cardiovascular symptoms and fatigue were positively correlated with the medication use. Medication-takers reported that they are psychologically receptive to the use of medication for prophylactic treatment of their cardiovascular problems. However, all do not view their medication as essential for their health. Duration of the medication regimen, type of medication, and perception of controllability of the condition were each independently associated with respondents' perceptions of the necessity of taking beta- or Ca2+-channel blockers. Over 80% of the respondents reported that they choose their physical activities with their diagnosis in mind. Modifying exercise activities was significantly correlated with an increased perception of Marfan syndrome as having negative consequences on the respondents' lives. Genetic counseling should address beliefs about medication use and physical activity restrictions, as perceptions of these health behaviors may have significant impact on how adults with Marfan syndrome adhere to these recommendations and cope with their condition.
authors.affiliation: Department of Medicine, Center for Developmental and Health Genetics, Pennsylvania State University, University Park, PA 16802, USA. kfp1@psu.edu
authors.forename: K F
authors.initials: KF
authors.lastname: Peters
authors.forename: R
authors.initials: R
authors.lastname: Horne
authors.forename: F
authors.initials: F
authors.lastname: Kong
authors.forename: C A
authors.initials: CA
authors.lastname: Francomano
authors.forename: B B
authors.initials: BB
authors.lastname: Biesecker
mesh_terms: D000328:Adult; D002121:Calcium Channel Blockers / Q000627:therapeutic use; D002318:Cardiovascular Diseases / Q000150:complications / Q000188:drug therapy / Q000503:physiopathology; D015444:Exercise / Q000502:physiology / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D008019:Life Style; D008297:Male; D008382:Marfan Syndrome / Q000150:complications / Q000188:drug therapy* / Q000503:physiopathology / Q000523:psychology*; D010349:Patient Compliance; D012651:Self Medication / Q000523:psychology / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D016312:Treatment Refusal
chemical_list: D002121:Calcium Channel Blockers