4.4 Article

Treatment decision making for adolescents with familial hypercholesterolemia: Role of family history and past experiences

期刊

JOURNAL OF CLINICAL LIPIDOLOGY
卷 9, 期 4, 页码 583-593

出版社

ELSEVIER SCIENCE INC
DOI: 10.1016/j.jacl.2015.04.008

关键词

Cholesterol; Familial hypercholesterolemia; Adolescent; Experiential evidence; Decision making

资金

  1. Patient-Centered Outcomes Research Institute Assessment of Prevention, Diagnosis, and Treatment Options Program Award [1443]
  2. National Center for Research Resources [UL1RR025752]
  3. National Center for Advancing Translational Sciences, National Institutes of Health [UL1TR000073, UL1TR001064]

向作者/读者索取更多资源

BACKGROUND: Adolescents and young adults (AYAs) with familial hypercholesterolemia (FH) are at high risk for underdiagnosis and inadequate treatment. Yet, little is known about the factors that influence the medical decision making of AYAs with FR and their families. OBJECTIVE: This study explores how family medical history, family narratives of medical experiences, and AYA medical experiences together function as experiential evidence and influence screening and treatment decisions. METHODS: Twenty-four parents and AYAs affected by FR from a pediatric preventive cardiology practice responded to a survey and a semistructured qualitative interview. Transcribed interviews were analyzed using a modified grounded theory approach. Study design, instruments, and interpretation of results were informed by a 20-member stakeholder panel. RESULTS: AYAs and parents reported extensive personal and family experiences with cholesterol and cardiovascular conditions and treatments, sometimes distinct from FH, which were used as evidence to inform their own perceptions of FH risk and treatment. This experiential evidence impacted perceptions of: (1) hereditary risk for FR diagnoses, (2) risk for future cardiovascular disease, (3) risks associated with treatments, and (4) capacity to comply with recommended treatments. Although experiences of family members initially informed screening and treatment decisions, the subsequent personal experiences of AYAs led to new experiential evidence that informed future decisions. CONCLUSIONS: Family cardiovascular history related to and distinct from FH influenced screening and treatment decisions of AYAs and parents affected by FR. Additional clinical assessment of personal and family medical experiences may enhance understanding of the decision-making processes among AYAs and ultimately improve adherence to screening and treatment recommendations. (C) 2015 National Lipid Association. All rights reserved.

作者

我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。

评论

主要评分

4.4
评分不足

次要评分

新颖性
-
重要性
-
科学严谨性
-
评价这篇论文

推荐

暂无数据
暂无数据