Patient preference and adherence最新文献

{"title":"Enablers and Barriers to Medication Self-Management in Patients With Type 2 Diabetes: A Qualitative Study Using the COM-B Model.","authors":"Huiqin Li, Ying Li, Jing Wang, Yuyao Zhang, Shiyan Ben","doi":"10.2147/PPA.S503350","DOIUrl":"10.2147/PPA.S503350","url":null,"abstract":"<p><strong>Introduction: </strong>Type 2 diabetes mellitus is a chronic disease of global concern. Medication self-management is the process by which an individual actively plans, monitors, evaluates, feeds back, controls, and regulates their medication through their behavior and awareness. Patients' medication self-management is key to glycemic control. A comprehensive understanding of the factors influencing medication self-management and the implementation of effective intervention programs is therefore paramount.</p><p><strong>Objective: </strong>To examine the enablers and barriers to medication self-management in patients with type 2 diabetes mellitus and to propose a corresponding medication self-management program to improve medication self-management.</p><p><strong>Methods: </strong>This qualitative study drew up the interview outline with reference to the COM-B model. Sampling was done using purposive sampling method and data collection was done using semi-structured interviews. The interviews mainly included patients' challenges and facilitators in the process of medication self-management. The data were analyzed using a framework analysis method, and themes were generated using the COM-B model.</p><p><strong>Results: </strong>A total of 20 patients participated in this study. The enablers identified within the COM-B model were the policy support for medical insurance and higher medication self-efficacy. The barriers include low medication literacy, aging of body functions, changes in living habits, the impact of work, limited medical resources, misguided beliefs about medication, and emotional response. The online media applications and the impact of family and friends were mixed factors. Outside of the model, diet and exercise also have an impact. Finally, we propose targeted solutions to improve medication self-management based on the Behavior Change Wheel.</p><p><strong>Conclusion: </strong>This study proposes targeted medication self-management programs, including education interventions to improve medication literacy and self-efficacy, leveraging mobile smart devices, and improving health insurance policies to promote patient medication management levels. Our findings will contribute to medication self-management for type 2 diabetes and many more chronic diseases.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"485-501"},"PeriodicalIF":2.0,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11881755/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567909","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Group-Based Trajectory Modeling to Identify Patterns and Predictors of Adherence to Oral Endocrine Therapies in Underserved Population of Greater Houston Area.","authors":"Yashvi Patel, Hasan Alsaedi, Zahra Majd, Issra Altaie, Sama Rahimi, Bilqees Fatima, Onyebuchi Ononogbu, Susan Abughosh, Meghana V Trivedi","doi":"10.2147/PPA.S467892","DOIUrl":"10.2147/PPA.S467892","url":null,"abstract":"<p><strong>Background: </strong>Poor adherence to oral endocrine therapy (OET) is a significant problem among patients with hormone receptor-positive breast cancer as it results in higher risk of recurrence and mortality. Non-adherence to OET is prevalent among underserved patients, often attributable to socioeconomic factors and limited healthcare access. We evaluated OET adherence patterns over time using group-based trajectory modeling (GBTM) and identified predictors of suboptimal adherence trajectory among patients seen at Harris Health System, serving underserved patients in Houston, Texas.</p><p><strong>Methods: </strong>A single-center, retrospective study was conducted from October 2019 through December 2020. OET adherence was measured using proportion of days covered (PDC). A logistic GBTM was conducted using 2-5 adherence groups considering the Bayesian information criteria, clinical relevance, and a 5% minimum membership requirement. Multinomial logistic regression was used to assess the predictors of non-adherence trajectories.</p><p><strong>Results: </strong>Among 496 patients, majority were Hispanic (62.50%) or African American (15.12%) and <65 years of age (82.66%). Four distinct adherence trajectories were identified: consistent high adherence (41.4%); constant PDC at ~0.6 (32.6%); rapid decline (14.6%); low adherence with gradual decline (11.5%). African Americans had higher likelihood of having low adherence with gradual decline [odds ratio (OR): 2.462 (confidence interval (CI): 1.1149-5.276), p=0.0205]. Patients with diabetes were more likely to have constant PDC at ~0.6 [OR: 1.714 (CI: 1.042-2.820), p=0.0338]. Longer time (4 or greater years) on therapy predicted low adherence with gradual decline [OR: 2.463 (CI: 1.266-4.793), p=0.008) and constant PDC at ~0.6 (OR: 1.966 (CI: 1.141-3.388), p=0.0149] trajectories.</p><p><strong>Conclusion: </strong>The identified predictors, including comorbidities like diabetes, African American descent, and longer OET treatment are crucial considerations when developing patient-centered interventions to enhance OET adherence among underserved populations. These insights can guide the implementation of initiatives such as mobile health applications, community-based educational programs, and financial aid efforts.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"473-484"},"PeriodicalIF":2.0,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11882467/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143573611","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Antecedents of Patient Loyalty: Exploring Mediating and Moderating Paradigms in Public Hospitals.","authors":"Abid Hussain, Shahida Kanwel, Sania Khan, Wadi B Alonazi, Azam Malik, Ali Ahmed Khan","doi":"10.2147/PPA.S492710","DOIUrl":"10.2147/PPA.S492710","url":null,"abstract":"<p><strong>Purpose: </strong>Countries around the world acknowledge the vital role of effective healthcare services in fostering economic, social, and human development. Consequently, many are striving to enhance their medical facilities. This study specifically examines public hospitals in Pakistan and aims to create a framework for evaluating patient loyalty.</p><p><strong>Methods: </strong>Responses from 650 patients were collected using a random sampling technique. The gathered data were analyzed using the Statistical Program for Social Sciences (SPSS) and Analysis of Moment Structures (AMOS).</p><p><strong>Results: </strong>The analysis revealed significant relationships among administrative procedures, service effectiveness, patient satisfaction, and loyalty. Additionally, the study identified patient satisfaction and administrative procedures as mediators between service effectiveness and patient loyalty. It also investigated the moderating roles of participative leadership and brand image in shaping administrative procedures, patient satisfaction, and patient loyalty.</p><p><strong>Conclusion: </strong>These findings offer valuable insights for healthcare authorities in formulating strategies to improve service delivery in public hospitals. Addressing existing deficiencies and enhancing healthcare systems is essential to fostering patient loyalty in these environments.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"527-542"},"PeriodicalIF":2.0,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11882465/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143573610","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the Perceptions and Self-Perceptions of Therapeutic Adherence in Older Adults With Chronic Conditions: A Scoping Review.","authors":"Leovaldo Alcântara, Teodora Figueiredo, Elísio Costa","doi":"10.2147/PPA.S496707","DOIUrl":"10.2147/PPA.S496707","url":null,"abstract":"<p><p>Few interventions and programmes have proved to be effective in increasing therapeutic adherence. Numerous efforts have been made to identify key factors that significantly influence adherence. In older adults, non-adherence can result from several problems, including insufficient income, lack of health insurance, multimorbidities, polypharmacy, functional disabilities, low medication literacy and demographic factors. However, psychological and psychosocial factors are often neglected in the study of patient-related factors. This scoping review aimed to study the perceptions and self-perceptions that influence all dimensions of therapeutic adherence in older adults with chronic conditions. This scoping review was conducted in accordance with the PCC strategy and following the PRISMA Extension for Scoping Reviews checklist. Three databases (PubMed, Web of Science, and Scopus) were searched from 2014 to the date of the research. In the initial search in the databases, 910 articles were retrieved. After applying the inclusion and exclusion criteria, 15 studies were selected for inclusion. In the selected studies, the factors most consistently associated with perceptions and self-perceptions influencing adherence were: perceived self-efficacy, perception of illness, beliefs about medications, self-perception of physical health status, self-perception of mental health status, perception of social support and perception of ageing. Furthermore, it was identified that there are few studies on patients' perceptions and self-perceptions related to treatment. The way adherence and related factors were assessed was mainly through the use of self-report scales. Concluding, this scoping review sheds light on the complex factors that influence therapeutic adherence in older adults, emphasizing the role of perceptions and self-perceptions. The psychological and subjective aspects that affect the perceptions and self-perceptions of the older adult population concerning the treatment of chronic diseases have not been deeply studied. Research involving interviews and focus groups with this population can lead to a better understanding of non-adherence and promote effective interventions to increase adherence.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"503-526"},"PeriodicalIF":2.0,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11881769/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567910","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Treatment Patterns and Healthcare Resource Utilization by Gender and Migraine Frequency in Adult Patients Receiving Galcanezumab Versus Standard of Care Preventive Medications Over 24 months: A United States Retrospective Claims Study.","authors":"Oralee J Varnado, Michelle Vu, Erin K Buysman, Gilwan Kim, Gayle Allenback, Margaret Hoyt, Helen Trenz, Feng Cao, Lars Viktrup","doi":"10.2147/PPA.S492300","DOIUrl":"10.2147/PPA.S492300","url":null,"abstract":"<p><strong>Objective: </strong>To describe 24-month treatment patterns, healthcare resource utilization (HCRU), and direct costs of patients initiating galcanezumab (GMB) versus standard of care migraine preventive medications (SOC), stratified by gender and migraine type.</p><p><strong>Methods: </strong>This retrospective cohort study used Optum's^® de-identified Market Clarity database (September 2018-March 2020) and included adults with migraine with ≥1 claim for GMB or SOC. Patients in the GMB cohort were stratified by gender (female/male) and migraine type (CM/EM), and propensity score matched 1:1 to patients in the SOC cohort. Treatment patterns, all-cause and migraine-related HCRU, and direct costs for GMB versus SOC cohorts were compared using a Z-test and reported over 24 months.</p><p><strong>Results: </strong>Following stratification and matching, the GMB and SOC cohorts included the following patient pairs: 2015-female, 292-male, 1024-CM, and 1282-EM. Treatment adherence, measured by proportion of days covered, and median time to treatment discontinuation were significantly greater in those initiating GMB compared with SOC in females, males, patients with CM, and patients with EM (all <i>p</i> <0.001). Over 24 months, reduction in migraine-related ambulatory visits, office visits, and medical costs were significantly higher in GMB versus SOC cohorts in females and patients with CM. Increases in HCRU associated with preventive migraine medication counts and migraine-related total and pharmacy costs were significantly higher in GMB versus SOC cohorts in all subgroups.</p><p><strong>Conclusion: </strong>While direct costs over 24 months were higher in patients initiating GMB for migraine prevention, better adherence and longer treatment duration with GMB regardless of gender or migraine type support the use of GMB compared with SOC.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"543-567"},"PeriodicalIF":2.0,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11881638/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Doctor-Led, Patient-Centered\": A Mixed-Method Research Comparing Patients' and Doctors' Treatment Outcome Choices for Chronic Low Back Pain.","authors":"Xia Li, Ying Zhang, Zhuxin Mao, Qianji Chen, Xiaoxue Lan, Hong Chen, Ya-Nan Sun, Chang-He Yu, Xi-You Wang","doi":"10.2147/PPA.S501409","DOIUrl":"10.2147/PPA.S501409","url":null,"abstract":"<p><strong>Background: </strong>Chronic low back pain (CLBP) significantly impacts quality of life. Treatment outcomes are influenced by the perspectives and expectations of both patients and doctors, making it crucial to understand these views to optimize care and satisfaction.</p><p><strong>Purpose: </strong>This study aims to analyze the alignment and differences in doctors' and patients' perceptions of treatment outcomes and explore the implications of these differences.</p><p><strong>Methods: </strong>An explanatory sequential mixed-methods design was used, involving a questionnaire survey and two focus groups. The study was conducted at Dongzhimen Hospital from August 2020 to January 2021. Participants, including patients with any type of CLBP (age≥18) and doctors with at least one year of experience, were selected via purposive sampling. Quantitative data, analyzed with SPSS, were summarized as percentages for categorical variables and as means with standard deviations or medians for continuous variables. Differences between variables were assessed using the Chi-square and nonparametric rank sum tests. Focus group discussions were analyzed thematically to explore differing perspectives on treatment outcomes.</p><p><strong>Results: </strong>A questionnaire gathered perspectives from 30 patients (mean age 45±11.74 years) and 26 doctors (mean age 41.7±6.7 years). The results informed the development of specific questions for focus group interviews with 8 patients and 8 doctors. Quantitative results revealed that pain/discomfort and activities of daily living were equally important to both groups. However, many outcomes were valued differently. Five themes emerged: 1) Doctors' focus on treating the whole person; 2) Patients' emphasis on cost-effectiveness/satisfaction; 3) Patients' prioritization of body image and physical function; 4) Shared priority beyond pain; 5) Shared concerns on adverse events.</p><p><strong>Conclusion: </strong>This study highlights the importance of aligning treatment expectations between patients and doctors to improve satisfaction and outcomes in CLBP management. Enhanced communication strategies and shared decision-making are recommended to bridge these gaps.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"433-450"},"PeriodicalIF":2.0,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11878113/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143557667","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impact of Antepartum Case-Based Learning on Glycemic Control and Self-Management Skills in Women with Gestational Diabetes: A Patient-Centered Non-Parallel Quasi-Experimental Study.","authors":"Guifen Wen, Jinguo Zhai, Peixuan Wen, Fang Yang, Xiaoxia Xie","doi":"10.2147/PPA.S503359","DOIUrl":"10.2147/PPA.S503359","url":null,"abstract":"<p><strong>Introduction: </strong>Gestational diabetes mellitus (GDM) is a growing global concern. GDM increases the risk of complications in both mothers and infants, including preeclampsia, macrosomia, and a higher likelihood of developing type 2 diabetes later in life. This study aimed to assess whether integrating case-based learning (CBL) with traditional education could improve glycemic control and patient outcomes in women with GDM.</p><p><strong>Methods: </strong>This non-parallel quasi-experimental study compared CBL interventions with traditional education in GDM women. Pregnant women from September 2022 to March 2023 received only traditional education (control group), whereas those from April to September 2023 received both case-based and traditional education (intervention group). The primary outcomes included fasting and 2-hour postprandial blood glucose level changes after the intervention. The secondary outcomes included self-management behavior changes (Self-Management Scale for Women with GDM), self-efficacy (Pregnancy Exercise Self-Efficacy Scale), GDM understanding (self-developed questionnaire), satisfaction, pregnancy weight gain, and macrosomia incidence.</p><p><strong>Results: </strong>A total of 140 GDM women were included, with the intervention and control groups containing 70 participants each. The intervention group showed significantly greater reductions in fasting and 2-hour postprandial blood glucose levels than the control group (<i>p</i><0.001). In addition, the intervention group demonstrated notable improvements in self-management behaviors, GDM knowledge, and patient satisfaction. The incidence of macrosomia was also significantly lower in the intervention group (1.6% vs 10.8%, <i>p</i>=0.034), indicating better neonatal outcomes.</p><p><strong>Conclusion: </strong>CBL could be incorporated into traditional education in GDM women to improve their self-management and self-efficacy for better glycemic control and pregnancy outcomes. Healthcare providers should be educated on the CBL and relevant policies should be developed to facilitate the implementation of CBL in the clinical practice.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"451-462"},"PeriodicalIF":2.0,"publicationDate":"2025-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11874955/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143542925","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementing a Care Model for Bedridden Stroke Survivors: A Qualitative Study in Northeastern Thailand [Letter].","authors":"Haihang Zhang, Jiayang Liu","doi":"10.2147/PPA.S523409","DOIUrl":"https://doi.org/10.2147/PPA.S523409","url":null,"abstract":"","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"431-432"},"PeriodicalIF":2.0,"publicationDate":"2025-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11871943/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143542926","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Experiences and Preferences Regarding Medication Cost Discussions Among Heart Failure Patients in Singapore: A Qualitative Survey.","authors":"Qianyu Shen, Dennis Chin Wee Chua, Po Fun Chan, Sean Wei Jun Chan, Hwee-Lin Wee","doi":"10.2147/PPA.S502235","DOIUrl":"10.2147/PPA.S502235","url":null,"abstract":"<p><strong>Purpose: </strong>Cost of novel medications has increased worldwide, causing financial toxicity to heart failure patients. Patients can discuss medication costs with clinicians to manage financial burden, but such discussion can be uncommon. This study seeked to investigate the experiences and preferences of heart failure patients in Singapore regarding medication cost discussions to develop effective strategies to encourage such conversations.</p><p><strong>Patients and methods: </strong>Participants were recruited from a hospital outpatient heart failure clinic in 2022 to participate in a qualitative survey containing open-ended questions. Inclusion criteria were patients aged 21 years and above, diagnosed with heart failure, and capable of comprehending English. There were no exclusion criteria. Conventional content analysis was performed on collected responses.</p><p><strong>Results: </strong>Among forty-eight heart failure patients (median age: 63.5 years, 43.8% male, 72.9% Chinese) who participated, most (93.8%) wanted to discuss medication costs with clinicians for reasons such as concern over affordability, taking ownership of health, making informed decisions, minimizing inconvenience, and obtaining tailored cost information. Affordability of medications was a concern for patients but only 8.3% of patients actually had regular cost discussions with clinicians in the past year. Patients mentioned a lack of initiative from the clinicians, limited cost awareness, and time constraints as reasons why cost conversations did not happen.</p><p><strong>Conclusion: </strong>Outpatient heart failure patients in Singapore desire to discuss medication costs with clinicians but few participants reported having such conversations. Barriers hindering cost discussions have to be addressed to ensure patients make an informed medication decision with minimal financial burden.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"407-418"},"PeriodicalIF":2.0,"publicationDate":"2025-02-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11863787/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143516291","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Living with Elevated Lipoprotein(a) Levels: The Experiences of Patients and Caregivers.","authors":"Elisabeth Steinhagen-Thiessen, Magdalena Daccord, Emma C Print, Yujiao Wang, Janine Shipton, India Rijken, Michael Shipton, Flavia Perna, Matthias Schoenberger","doi":"10.2147/PPA.S478623","DOIUrl":"10.2147/PPA.S478623","url":null,"abstract":"<p><strong>Background: </strong>Elevated lipoprotein(a) (Lp[a]) is an inherited condition that increases cardiovascular disease (CVD) risk, independent of other factors, such as low-density lipoprotein C. Few attempts have been made to explore the life experiences of people with elevated Lp(a).</p><p><strong>Objective: </strong>To explore the experiences of people living with or caring for a relative with elevated Lp(a).</p><p><strong>Methods: </strong>Two multinational, virtual, interactive, moderated discussions of specific questions between people with elevated Lp(a) and relatives (caregivers), with experienced clinicians attending.</p><p><strong>Results: </strong>Fifteen individuals with elevated Lp(a) and nine relatives took part in the virtual discussions. The most frequent reasons to measure Lp(a) levels were prior CVD events, eg, heart attacks, stroke, aortic valve diseases, or a family history of CVD events. Clinicians were often reluctant to measure Lp(a) levels as no effective treatment is available to people with elevated values. The most common interventions after confirmed elevated Lp(a) levels were lifestyle modifications and cholesterol-lowering medications to reduce overall CVD risk. A healthy lifestyle with diet and exercise was perceived as unsuccessful in managing overall CVD risk by 25% of people with elevated Lp(a) and 38% of relatives. Lifestyle advice was considered conflicting, unclear and inconsistent. Participants experienced elevated Lp(a) as an \"invisible\" disorder with very low awareness in the general population. Physicians' advice was often too superficial to meet patients' needs, putting insufficient emphasis on prevention and focusing on interventions after a CVD event.</p><p><strong>Conclusion: </strong>Elevated Lp(a) was considered an \"invisible\" disorder with limited understanding among physicians and the general public. This reduces access to tests and shifts physician focus away from prevention towards reactive intervention.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"395-405"},"PeriodicalIF":2.0,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11853138/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143503319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}