scholarly journals Barriers, facilitators, and solutions to familial hypercholesterolemia treatment

PLoS ONE ◽  
2020 ◽  
Vol 15 (12) ◽  
pp. e0244193
Author(s):  
Laney K. Jones ◽  
Amy C. Sturm ◽  
Terry L. Seaton ◽  
Christina Gregor ◽  
Samuel S. Gidding ◽  
...  

Background 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. Methods and results 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. Conclusions 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.

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
J. Huglin ◽  
L. Whelan ◽  
S. McLean ◽  
K. Greer ◽  
D. Mitchell ◽  
...  

Abstract Background Allied health assistants (AHAs) support allied health professionals (AHPs) to meet workforce demands in modern healthcare systems. Previous studies have indicated that AHAs may be underutilised in some contexts. This study aims to identify factors contributing to the effective utilisation of AHAs across health, aged care and disability sectors and possible pathway elements that may optimise AHA careers in Victoria. Methods Using an interpretive description approach data collection included a workforce survey and semi structured interviews (individual and group). Data analysis included descriptive statistics, independent t-tests and thematic analysis. Participants included allied health assistants, allied health professionals and allied health leaders in the health, aged care or disability sectors; educators, managers or student of allied health assistance training; and consumers of Victorian health, disability or aged care services. Results The literature scan identified numerous potential barriers to and enablers of AHA workforce utilisation. A total of 727 participants completed the survey consisting of AHAs (n = 284), AHPs & allied health leaders (n = 443). Thirteen group and 25 individual interviews were conducted with a total of 119 participants. Thematic analysis of the interview data identified four interrelated factors (system, training, individual and workplace) in pre-employment training and workplace environments. These factors were reported to contribute to effective utilisation of the AHA workforce across health, aged care and disability sectors. Study findings were also used to create a conceptual diagram of potential AHA career pathway elements. Conclusion This study identified pre-employment and workplace factors which may contribute to the optimal utilisation of the AHA workforce across Victorian health, aged care and disability sectors. Further study is needed to investigate the transferability of these findings to national and global contexts, and testing of the conceptual model.


2019 ◽  
Vol 13 (4) ◽  
pp. 627-633.e1 ◽  
Author(s):  
Martine Paquette ◽  
Sophie Bernard ◽  
George Thanassoulis ◽  
Alexis Baass

Circulation ◽  
2015 ◽  
Vol 132 (suppl_3) ◽  
Author(s):  
Sarah S Cohen ◽  
Edmond K Kabagambe ◽  
Jana Shirey-Rice ◽  
Jill Hardin ◽  
Keri Monda ◽  
...  

Introduction: Heterozygous familial hypercholesterolemia (FH) is common but under-recognized, with an estimated prevalence of 1:200-1:500 and an associated high risk of premature cardiovascular disease (CVD). Little is known regarding the association between change in low-density lipoprotein cholesterol (LDL-C) and long-term CVD risk in FH patients. We hypothesized that FH patients who achieved LDL-C < 100 mg/dL or reduction ≥50% post-statin initiation would have reduced risk of non-fatal myocardial infarction (MI) or revascularization. Methods: Using Dutch Lipid Network criteria components, 174 “probable” and 125 “definite” FH patients with LDL-C measurements available before and after statin initiation were identified in the Vanderbilt de-identified electronic medical records (EMR) Synthetic Derivative database, 1996-2014. First non-fatal MI or revascularization was identified via validated EMR algorithm with positive predictive value=92%. Hazard ratios (HR) and 95% confidence intervals (CI) were obtained from Cox regression models in relation to LDL-C levels (≥ vs. <50% reduction or < vs. >100 mg/dL post-statin), adjusted for age, race, sex, blood pressure, smoking, and body mass index. Results: Mean (+/- SD) LDL-C levels prior to initiation of statin therapy were 207 (+/- 31) for probable and 304 (+/- 124) mg/dL for definite FH patients. Similar proportions of patients attained ≥50% reduction in LDL-C after statin initiation in both groups (24.1% and 26.4%), while 22.4% achieved LDL-C < 100 mg/dL in the probable group compared to only 4.8% in the definite group. Over median follow-up of 5.4 years, 34 probable and 19 definite FH patients experienced non-fatal MI or revascularization. The HR (95% CI) among those with post-statin LDL-C < 100 vs >100 mg/dL was 0.59 (0.23-1.52) overall, with no evidence of effect modification by probable/definite FH status (likelihood ratio test (LRT) p-value=0.58). A similar pattern was observed for LDL-C change ≥50% vs <50% (HR (95% CI) 0.58 (0.24-1.38), LRT p-value=0.44). Conclusions: In this small sample of FH patients, lowering LDL-C to <100 mg/dL suggests a reduction in CVD risk, but few attained this LDL-C target. These results warrant further research in larger populations of this understudied condition.


2021 ◽  
Vol 2021 ◽  
pp. 1-6
Author(s):  
Golnaz Vaseghi ◽  
Marzieh Taheri ◽  
Kiyan Heshmat-Ghahdarijani ◽  
Mohammad Rayati ◽  
Sonia Zarfeshani ◽  
...  

Background. Familial hypercholesterolemia (FH) is a common autosomal dominant disease. Its diagnosis in Iran was uncommon. Iran registry of FH (IRFH) has been started from 2017 from Isfahan. In this study, we report the four-year FH registry. Methods. The Iran FH registry is an ongoing study which is followed by a dynamic cohort. It has been started from 2017. The patients are selected from laboratories due to high cholesterol level and who have history of premature cardiovascular disease. The Dutch Lipid Clinic Network (DLCN) criteria are used for the detection of FH. Cascade screening is performed for detection of first-degree relative of patients. Results. Among the 997 individuals included in this registry, they were 522 (mean age 51.41 ± 12.91 year), 141 (mean age 51.66 ± 8.3 year), and 129 (mean age 41 ± 16.5 year) patients from laboratories, premature cardiovascular disease, and relatives, respectively. In total, 263 patients were diagnosed with probable or definite FH, and others were in the possible group. Low-density lipoprotein cholesterol (LDL) level was 141.42 ± 45.27   mg / dl in the laboratory group and 54.9% of patients were on LLT treatment. In patients with premature cardiovascular disease and FH, the LDL level was 91.93 ± 32.58 and was on LLT treatment. The LDL concentration in the first relative of FH patients was 152.88 ± 70.77 and 45.7% of them are on LLT therapy. Conclusions. Most of FH patients were underdiagnosed and undertreated before their inclusion in the IRFH. Cascade screening helps in the improvement of diagnosis.


BMC Nursing ◽  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Judy Brook ◽  
Leanne M. Aitken ◽  
Julie-Ann MacLaren ◽  
Debra Salmon

Abstract Aims To understand the experiences of nursing students and academic staff of an intervention to decrease burnout and increase retention of early career nurses, in order to identify acceptability and feasibility in a single centre. Background Internationally, retention of nurses is a persistent challenge but there is a dearth of knowledge about the perspectives of stakeholders regarding the acceptability and feasibility of interventions to resolve the issue. This study reports an intervention comprising of mindfulness, psychological skills training and cognitive realignment to prepare participants for early careers as nurses. Methods This is an explanatory sequential mixed methods study, conducted by a UK university and healthcare organisation. Participants were final year pre-registration nursing students (n = 74) and academics (n = 7) involved in the implementation of the intervention. Pre and post measures of acceptability were taken using a questionnaire adapted from the Theoretical Framework of Acceptability. Wilcoxon Signed Ranks test was used to assess change in acceptability over time. Qualitative data from semi-structured interviews, focus groups and field notes were thematically analysed, adhering to COREQ guidelines. Data were collected February to December 2019. Results One hundred and five questionnaires, 12 interviews with students and 2 focus groups engaging 7 academic staff were completed. The intervention was perceived as generally acceptable with significant positive increases in acceptability scores over time. Student nurses perceived the intervention equipped them with skills and experience that offered enduring personal benefit. Challenges related to the practice environment and academic assessment pressures. Reported benefits align with known protective factors against burnout and leaving the profession. Conclusion Planning is needed to embed the intervention into curricula and maximise relationships with placement partners. Evaluating acceptability and feasibility offers new knowledge about the value of the intervention for increasing retention and decreasing burnout for early career nurses. Wider implementation is both feasible and recommended by participants.


2021 ◽  
Vol 7 ◽  
pp. 233372142110093
Author(s):  
Adrienne Cohen

The objective of this study was to use intersectionality to better understand the challenges of having the combined statuses of being an older adult, living in a rural area and having limited financial resources. Eight focus groups and 38 individual interviews were conducted in southern Georgia. Participants included program participants and staff, community members, and community leaders. Thematic analysis was done using verbatim transcripts from focus groups and interviews. Results demonstrate that the multiplicative and intersecting statuses of the study population create challenges in the areas of transportation, health care, food, and housing. The challenges of these intersectional statuses limit access to services in ways that each individual status did not, thereby compounding challenges. While previous literature describes the challenges of one or two of these statuses, this work explores the multiplicative effects of the combination of the three statuses using intersectionality. Programmatic and policy recommendations and implications are discussed.


Author(s):  
Ellen J. Bass ◽  
Andrew J. Abbate ◽  
Yaman Noaiseh ◽  
Rose Ann DiMaria-Ghalili

There is a need to support patients with monitoring liquid intake. This work addresses development of requirements for real-time and historical displays and reports with respect to fluid consumption as well as alerts based on critical clinical thresholds. We conducted focus groups with registered nurses and registered dietitians in order to identify the information needs and alerting criteria to support fluid consumption measurement. This paper presents results of the focus group data analysis and the related requirements resulting from the analysis.


2021 ◽  
Vol 6 (1) ◽  
Author(s):  
Noémie Aubert Bonn ◽  
Wim Pinxten

Abstract Background Success shapes the lives and careers of scientists. But success in science is difficult to define, let alone to translate in indicators that can be used for assessment. In the past few years, several groups expressed their dissatisfaction with the indicators currently used for assessing researchers. But given the lack of agreement on what should constitute success in science, most propositions remain unanswered. This paper aims to complement our understanding of success in science and to document areas of tension and conflict in research assessments. Methods We conducted semi-structured interviews and focus groups with policy makers, funders, institution leaders, editors or publishers, research integrity office members, research integrity community members, laboratory technicians, researchers, research students, and former-researchers who changed career to inquire on the topics of success, integrity, and responsibilities in science. We used the Flemish biomedical landscape as a baseline to be able to grasp the views of interacting and complementary actors in a system setting. Results Given the breadth of our results, we divided our findings in a two-paper series, with the current paper focusing on what defines and determines success in science. Respondents depicted success as a multi-factorial, context-dependent, and mutable construct. Success appeared to be an interaction between characteristics from the researcher (Who), research outputs (What), processes (How), and luck. Interviewees noted that current research assessments overvalued outputs but largely ignored the processes deemed essential for research quality and integrity. Interviewees suggested that science needs a diversity of indicators that are transparent, robust, and valid, and that also allow a balanced and diverse view of success; that assessment of scientists should not blindly depend on metrics but also value human input; and that quality should be valued over quantity. Conclusions The objective of research assessments may be to encourage good researchers, to benefit society, or simply to advance science. Yet we show that current assessments fall short on each of these objectives. Open and transparent inter-actor dialogue is needed to understand what research assessments aim for and how they can best achieve their objective. Study Registration osf.io/33v3m.


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