Patients’ and Doctors’ Beliefs about Treatment and Long-Term Adherence in Rheumatic Diseases

Objective: The aim of this study was to explore the beliefs of rheumatologists and patients about treatment-related factors, long-term adherence, and their communication with regard to rheumatic diseases. Methods: In a multicentre, observational study conducted in Greece, a structured questionnaire was administered to 75 rheumatologists and 398 rheumatic patients from different regions. Five domains were investigated: i) effectiveness of treatment, ii) choice of treatment, iii) change of ineffective treatment, iv) long-term adherence, and v) the quality of communication between doctors and patients. Descriptive data, confidence intervals, t-tests and factor analysis were employed. Results: Examining the patients’ and rheumatologists’ beliefs and attitudes about treatment profiles and long-term adherence, a statistically significant convergence in their views on effectiveness and safety as the predominant factors concerning choice of treatment and long-term adherence was found. Although patients reported high trust to their doctors, a divergence of views is recorded regarding communication of the two parts. Statistically significant differences in the views between patients and rheumatologists were found with regards to access (p<0.001), time per visit (p<0.001), mutual understanding (p<0.001), and overall communication (p<0.001). Conclusions: Our study shows a great rate of agreement between patients and rheumatologists regarding the factors determining the efficacy, choice, switching and adherence to treatment while there was significant divergence in the views regarding the quality of communication between the two parts. Co-ordinated efforts are needed in order to improve the communication level between rheumatic patients and rheumatologists. © 2020. All Rights Reserved

Global perspective of familial hypercholesterolaemia: a cross-sectional study from the EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)

Background: The European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration (FHSC) global registry provides a platform for the global surveillance of familial hypercholesterolaemia through harmonisation and pooling of multinational data. In this study, we aimed to characterise the adult population with heterozygous familial hypercholesterolaemia and described how it is detected and managed globally. Methods: Using FHSC global registry data, we did a cross-sectional assessment of adults (aged 18 years or older) with a clinical or genetic diagnosis of probable or definite heterozygous familial hypercholesterolaemia at the time they were entered into the registries. Data were assessed overall and by WHO regions, sex, and index versus non-index cases. Findings: Of the 61 612 individuals in the registry, 42 167 adults (21 999 [53·6%] women) from 56 countries were included in the study. Of these, 31 798 (75·4%) were diagnosed with the Dutch Lipid Clinic Network criteria, and 35 490 (84·2%) were from the WHO region of Europe. Median age of participants at entry in the registry was 46·2 years (IQR 34·3–58·0); median age at diagnosis of familial hypercholesterolaemia was 44·4 years (32·5–56·5), with 40·2% of participants younger than 40 years when diagnosed. Prevalence of cardiovascular risk factors increased progressively with age and varied by WHO region. Prevalence of coronary disease was 17·4% (2·1% for stroke and 5·2% for peripheral artery disease), increasing with concentrations of untreated LDL cholesterol, and was about two times lower in women than in men. Among patients receiving lipid-lowering medications, 16 803 (81·1%) were receiving statins and 3691 (21·2%) were on combination therapy, with greater use of more potent lipid-lowering medication in men than in women. Median LDL cholesterol was 5·43 mmol/L (IQR 4·32–6·72) among patients not taking lipid-lowering medications and 4·23 mmol/L (3·20–5·66) among those taking them. Among patients taking lipid-lowering medications, 2·7% had LDL cholesterol lower than 1·8 mmol/L; the use of combination therapy, particularly with three drugs and with proprotein convertase subtilisin–kexin type 9 inhibitors, was associated with a higher proportion and greater odds of having LDL cholesterol lower than 1·8 mmol/L. Compared with index cases, patients who were non-index cases were younger, with lower LDL cholesterol and lower prevalence of cardiovascular risk factors and cardiovascular diseases (all p<0·001). Interpretation: Familial hypercholesterolaemia is diagnosed late. Guideline-recommended LDL cholesterol concentrations are infrequently achieved with single-drug therapy. Cardiovascular risk factors and presence of coronary disease were lower among non-index cases, who were diagnosed earlier. Earlier detection and greater use of combination therapies are required to reduce the global burden of familial hypercholesterolaemia. Funding: Pfizer, Amgen, Merck Sharp & Dohme, Sanofi–Aventis, Daiichi Sankyo, and Regeneron