将患者报告的结果整合到家族性高胆固醇血症的临床基因检测中

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Journal of Patient-Centered Research and Reviews Pub Date : 2021-10-18 eCollection Date: 2021-01-01 DOI:10.17294/2330-0698.1823
Rachele M Hendricks-Sturrup, Robert Block, Christine Y Lu
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引用次数: 9

摘要

患者报告结果(PRO)和PRO测量(PROMs)通常用于帮助临床医生和研究人员了解实施干预后患者的个人担忧、感受、经历和观点。值得注意的是,pro和prom可以根据每个患者的个人价值观、观点和检测后潜在的健康行为,告知卫生系统、卫生政策和支付方临床基因检测的效用。在本主题摘要中,我们讨论了家族性高胆固醇血症(FH)基因检测后PROs和PROMs的作用和意义,FH是一种常染色体显性的胆固醇代谢遗传疾病,可导致高度过早致死性和非致死性心肌梗死和中风。我们还讨论了为什么通过pro和prom使用和考虑患者观点对于优化各种FH治疗背景下的患者护理过程至关重要。当专家临床小组在建立FH基因检测建议时考虑最新证据时,临床医生和研究人员有一个成熟的机会来探索pro的价值和效用,以告知并可能改善FH诊断患者的护理。
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Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia.

Patient-reported outcomes (PROs) and PRO measures (PROMs) are often used to help clinicians and researchers understand patients' personal concerns, feelings, experiences, and perspectives following the implementation of an intervention. Notably, PROs and PROMs can inform health systems, health policy, and payers on the utility of clinical genetic testing based on each patient's personal values, perspectives, and potential health behaviors subsequent to testing. In this topic synopsis, we discuss the underexplored role of and implications for PROs and PROMs following genetic testing for familial hypercholesterolemia (FH), an autosomal dominant genetic disorder of cholesterol metabolism that can lead to highly premature fatal and nonfatal myocardial infarction and stroke. We also discuss why the use and consideration of patient perspectives, via PROs and PROMs, are critical to the process of optimizing patient care across various FH treatment contexts. As expert clinician groups consider the latest evidence when establishing recommendations for FH genetic testing, there is a ripe opportunity for clinicians and researchers to explore the value and utility of PROs to inform and possibly improve care for patients diagnosed with FH.

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来源期刊
Journal of Patient-Centered Research and Reviews
Journal of Patient-Centered Research and Reviews HEALTH CARE SCIENCES & SERVICES-
自引率
5.90%
发文量
35
审稿时长
20 weeks
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