Barriers, facilitators, and solutions to familial hypercholesterolemia treatment.
Barriers, facilitators, and solutions to familial hypercholesterolemia treatment.
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DOI：
10.1371/journal.pone.0244193
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发表时间：
2020
期刊：
影响因子：
3.7
通讯作者：
Rahm AK
中科院分区：
文献类型：
--
作者：
Jones LK;Sturm AC;Seaton TL;Gregor C;Gidding SS;Williams MS;Rahm AK
家族性高胆固醇血症(FH)是一种遗传性血脂紊乱，具有早产性心血管疾病的高风险，但仍未得到充分治疗。原因是多因素和多层次的，从开药不足(在临床医生层面)到药物不坚持(在患者层面)。我们评估了患者和临床医生治疗FH的利益相关者障碍和促进者，以探索问题的可能解决方案。在实用、稳健、实施和可持续发展模式(PRISM)的指导下，对三个医疗系统中的33名患者和17名临床医生利益相关者进行了半结构化访谈和焦点小组。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，其余的是个人访谈。使用迭代过程对记录进行编码，以创建静态码本。我们将患者和临床医生的利益相关者障碍分为三类：医疗、药物和生活相关。集思广益的解决方案的可行性各不相同，并不总是代表所有利益攸关方的需求。患者建议有必要进行儿童FH筛查，医生坚持认为治疗FH的重要性，创建患者同龄人小组，数据透明度，倡导和政策变化，使患者能够得到更好的治疗。临床医生利益相关者建议需要临床冠军。两个利益攸关方小组讨论了对妇女保健进行教育的必要性。这项研究的参与者提出了改善FH治疗的建议解决方案，包括为患者和临床利益相关者提供的资源，阐明FH的心血管疾病风险，开发计划以筛查和识别较年轻的FH，并促进患者和临床医生之间关于治疗的公开对话。
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.
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影响因子：
39.3
作者：
Nordestgaard BG;Chapman MJ;Humphries SE;Ginsberg HN;Masana L;Descamps OS;Wiklund O;Hegele RA;Raal FJ;Defesche JC;Wiegman A;Santos RD;Watts GF;Parhofer KG;Hovingh GK;Kovanen PT;Boileau C;Averna M;Borén J;Bruckert E;Catapano AL;Kuivenhoven JA;Pajukanta P;Ray K;Stalenhoef AF;Stroes E;Taskinen MR;Tybjærg-Hansen A;European Atherosclerosis Society Consensus Panel
通讯作者：
European Atherosclerosis Society Consensus Panel
DOI：
10.1038/gim.2015.187
发表时间：
2016-09
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Carey DJ;Fetterolf SN;Davis FD;Faucett WA;Kirchner HL;Mirshahi U;Murray MF;Smelser DT;Gerhard GS;Ledbetter DH
通讯作者：
Ledbetter DH
DOI：
10.1016/j.sapharm.2019.06.006
发表时间：
2020-03-01
影响因子：
3.9
作者：
Jones, Laney K.;Gidding, Samuel S.;Williams, Marc S.
通讯作者：
Williams, Marc S.
DOI：
10.1161/circgenetics.116.001381
发表时间：
2016-06
期刊：
Circulation. Cardiovascular genetics
影响因子：
--
作者：
deGoma EM;Ahmad ZS;O'Brien EC;Kindt I;Shrader P;Newman CB;Pokharel Y;Baum SJ;Hemphill LC;Hudgins LC;Ahmed CD;Gidding SS;Duffy D;Neal W;Wilemon K;Roe MT;Rader DJ;Ballantyne CM;Linton MF;Duell PB;Shapiro MD;Moriarty PM;Knowles JW
通讯作者：
Knowles JW
影响因子：
24
作者：
Khera AV;Won HH;Peloso GM;Lawson KS;Bartz TM;Deng X;van Leeuwen EM;Natarajan P;Emdin CA;Bick AG;Morrison AC;Brody JA;Gupta N;Nomura A;Kessler T;Duga S;Bis JC;van Duijn CM;Cupples LA;Psaty B;Rader DJ;Danesh J;Schunkert H;McPherson R;Farrall M;Watkins H;Lander E;Wilson JG;Correa A;Boerwinkle E;Merlini PA;Ardissino D;Saleheen D;Gabriel S;Kathiresan S
通讯作者：
Kathiresan S