Genomic Medicine Institute, Geisinger, Danville, PA, United States of America.
Center for Pharmacy Innovation and Outcomes, Geisinger, Danville, PA, United States of America.
PLoS One. 2020 Dec 23;15(12):e0244193. doi: 10.1371/journal.pone.0244193. eCollection 2020.
Familial hypercholesterolemia (FH) is an inherited lipid disorder that confers high risk for premature cardiovascular disease but remains undertreated. Causes are multifactorial and multilevel, ranging from underprescribing (at the clinician-level) to medication nonadherence (at the patient-level). We evaluated patient and clinician stakeholder barriers and facilitators for treatment of FH to explore possible solutions to the problem.
Semi-structured interviews and focus groups guided by the Practical, Robust, Implementation and Sustainability Model (PRISM), were conducted with 33 patients and 17 clinician stakeholders across three healthcare systems. A total of14 patients and 9 clinician stakeholders participated in on-site focus groups and the remainder were individual interviews. Transcripts were coded using an iterative process to create a static codebook. We characterized patient and clinician stakeholder barriers into three categories: medical care-, medication-, and life-related. Feasibility of brainstormed solutions varied and was not always representative of the needs of all stakeholders. Patients suggested a need for childhood screening for FH and doctors being persistent about the importance of treating FH, creation of a patient peer group, data transparency, advocacy, and policy changes that would enable patients to receive better treatment. Clinician stakeholders suggested the need for clinical champions. Both groups of stakeholders discussed the need for education about FH.
Proposed solutions to improve treatment of FH proffered by participants in this study included resources for both patients and clinician stakeholders that clarify cardiovascular disease risks from FH, develop programs to screen for and identify FH at younger ages, and foster open conversations between patients and clinicians about treatment.
家族性高胆固醇血症（FH）是一种遗传性脂质紊乱疾病，可导致早发性心血管疾病风险增加，但治疗不足。病因是多因素和多层次的，从开处方不足（在临床医生层面）到药物不依从（在患者层面）。我们评估了患者和临床医生利益相关者在 FH 治疗方面的障碍和促进因素，以探索解决该问题的可能方法。
采用实用、稳健、实施和可持续性模型（PRISM）指导的半结构式访谈和焦点小组，在三个医疗保健系统中对 33 名患者和 17 名临床医生利益相关者进行了研究。共有 14 名患者和 9 名临床医生利益相关者参加了现场焦点小组，其余的则接受了个人访谈。使用迭代过程对转录本进行编码，以创建静态代码本。我们将患者和临床医生利益相关者的障碍分为三类：医疗保健、药物和生活相关。头脑风暴解决方案的可行性各不相同，并不总是代表所有利益相关者的需求。患者建议对 FH 进行儿童筛查，并建议医生坚持治疗 FH 的重要性，创建患者同伴小组，提高数据透明度，倡导和政策改变，以使患者得到更好的治疗。临床医生利益相关者建议需要临床拥护者。两组利益相关者都讨论了需要对 FH 进行教育。
本研究参与者提出的改善 FH 治疗的建议包括为患者和临床医生利益相关者提供资源，以明确 FH 导致的心血管疾病风险，制定在更年轻时筛查和识别 FH 的计划，并促进患者与临床医生之间就治疗问题进行开诚布公的对话。
