Patient Related Outcome Measures最新文献

{"title":"Patient-Reported Outcomes in Rheumatoid Arthritis: A Key Consideration for Evaluating Biosimilar Uptake?","authors":"Gabriel Horta-Baas","doi":"10.2147/PROM.S256715","DOIUrl":"10.2147/PROM.S256715","url":null,"abstract":"<p><strong>Purpose: </strong>This review aims to provide an overview of the impact of TNFis biosimilars, with marketing authorization, in patient-reported outcome measures (PROMs) scores and explore how PROMs endpoints might add value in biosimilars uptake in RA patients.</p><p><strong>Patients and methods: </strong>A comprehensive search of Medline, Scopus, Lilacs, and CINAHL databases was performed for papers published between January 2012 and December 2021. For inclusion, studies had to be prospective, published in a peer-reviewed journal, published in English or Spanish language; studies using PROMs as an outcome measure. After screening title and abstracts and assessing the remaining full texts fulfilling the inclusion criteria, 31 papers were used in this narrative review.</p><p><strong>Results: </strong>PROMs were used as secondary outcomes in included studies. The most frequently employed domains to assess biosimilar efficacy include physical function, patient global assessment (PtGA), health-related quality of life (HRQoL), and fatigue. The results of randomized clinical trials uniformly showed that mean change in PROMs scores is comparable between biosimilar and reference biologic treatment groups. However, open-label and real-world studies revealed high rates of discontinuation of therapy, mainly for subjective worsening of disease activity or non-specific adverse events. Even without objective clinical evidence of inflammation, patients who are considered to have active disease (higher scores on PtGA) have higher discontinuation rates of biosimilars. The available information suggests that the nocebo effect is the most likely cause for the discontinuation of biosimilars.</p><p><strong>Conclusion: </strong>There is scarce literature surrounding the impact of biosimilars in PROMs, especially in open-label studies. In real-life studies, biosimilars have a higher discontinuation rate than reference products. TNFis biosimilars treatment efficacy in RA depends on disease activity and other factors such as PtGA and fatigue. The nocebo effect is the best explanation for biosimilar's discontinuation.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"13 1","pages":"79-95"},"PeriodicalIF":1.8,"publicationDate":"2022-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8977480/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47718087","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How to Improve Interpretability of Patient-Reported Outcome Measures for Clinical Use: A Perspective on Measuring Abilities and Feelings","authors":"J. Kopec","doi":"10.2147/PROM.S355679","DOIUrl":"https://doi.org/10.2147/PROM.S355679","url":null,"abstract":"Abstract Two general classes of concepts measured by patient-reported outcome measures (PROMs) are abilities and feelings. Over the past several decades, there has been a significant progress in measuring both. Nevertheless, current multi-item scales are subject to criticism related to scale length, score dimensionality, interpretability, cultural bias, and insufficient detail in measuring specific domains. To address some of these issues, the author offers an alternative perspective on how questions about abilities and feelings could be formulated. Abilities can be defined in terms of a relationship between the level of performance and the associated perception of difficulty, and represented graphically by an ability curve. For feelings, it may be useful to measure frequency and intensity jointly to determine the proportion of time in each level of intensity. The resultant frequency × intensity matrix can be presented as a bar graph. Empirical data to support the feasibility and validity of these approaches to PROM design are provided, potential advantages and limitations are discussed, and some future research avenues are suggested.","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"13 1","pages":"69 - 77"},"PeriodicalIF":2.1,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43028294","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient-Reported Outcome Measures in Adult Patients Diagnosed with Epilepsy Being Treated with Perampanel.","authors":"Brian D Moseley,&nbsp;Shaloo Gupta,&nbsp;Nate Way,&nbsp;Jonathon Wright,&nbsp;John C Rowland,&nbsp;Victoria E Barghout,&nbsp;Feride Frech,&nbsp;Craig Plauschinat","doi":"10.2147/PROM.S343302","DOIUrl":"https://doi.org/10.2147/PROM.S343302","url":null,"abstract":"<p><strong>Background: </strong>Epilepsy is a complex disorder that can affect patients' medical, psychological, and social well-being. The purpose of this study was to evaluate the patient-reported outcome (PRO) measures of health-related quality of life (HRQoL), satisfaction, and adherence in adult patients diagnosed with epilepsy treated with perampanel in the United States (US).</p><p><strong>Methods: </strong>A US-based, multicenter, observational cross-sectional survey was completed by 61 patients taking perampanel with or without other antiseizure medications (ASMs). Respondents were ≥18 years old, had a physician-confirmed diagnosis of epilepsy, used perampanel for ≥4 months, and provided informed consent. Patients responded to questions concerning their demographic characteristics, treatment history, experiences before perampanel, experiences while taking perampanel, HRQoL, treatment satisfaction, and medication adherence.</p><p><strong>Results: </strong>Patients (N=61) were 42.8 years old on average; majority were female (63.9%) and white (75.4%). Mean time on perampanel was 2.5 years, with sodium channel blockers often (55.7%) used concomitantly with perampanel. Patients reported, on average, 5.5 (standard deviation [SD]=13.2) seizures/month after initiating perampanel, whereas these same patients reported experiencing 20.4 (SD=60.0) seizures/month prior to perampanel. When comparing their experience on perampanel with their experience with previous ASMs, more patients \"strongly agreed\" that perampanel allowed them to live a more normal life (36.1% vs 27.5%) and worked as intended if they missed taking a dose (16.4% vs 7.8%). Average satisfaction scores were high, with ratings of 71.8 for effectiveness, 84.0 for convenience, and 71.9 for global satisfaction (0-100 scores). Perampanel use was associated with improvements in HRQoL and fewer symptoms of depression and anxiety. The majority of patients were adherent (62.3%) to perampanel.</p><p><strong>Discussion: </strong>Perampanel use was associated with reductions in number of seizures, better HRQoL, and high adherence rates. These results provide initial evidence that perampanel can be an effective, tolerable, and valid option for patients with epilepsy in the real world.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":" ","pages":"39-52"},"PeriodicalIF":2.1,"publicationDate":"2022-02-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/fa/6d/prom-13-39.PMC8841652.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39638048","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient and Caregiver Insights into the Disease Burden of Myelodysplastic Syndrome.","authors":"John Soper,&nbsp;Islam Sadek,&nbsp;Alyson Urniasz-Lippel,&nbsp;Deborah Norton,&nbsp;Marina Ness,&nbsp;Ruben Mesa","doi":"10.2147/PROM.S346434","DOIUrl":"https://doi.org/10.2147/PROM.S346434","url":null,"abstract":"<p><p>A diagnosis of myelodysplastic syndrome (MDS) is typically unexpected and can be difficult for patients to grasp. Not only is MDS a complicated disease to understand, which can contribute to stress and anxiety, but it also has an uncertain prognosis, which can be emotionally paralyzing. Not surprisingly, emotional distress and the symptom burden of MDS, including extreme fatigue due to cytopenias, negatively impact a patient's quality of life (QOL). Studies have shown that patient-centered care-including greater physician understanding of the disease burden their patients experience, discussing and establishing agreed-on treatment goals, and including patients in the decision-making process about their care-may help improve patient QOL. To better understand patient and caregiver experiences with MDS and how the disease impacts QOL, a small survey was conducted of patients with MDS or leukemia and their caregivers on an online health network. Among the 30 respondents who completed the survey, four had MDS and one was a caregiver for a patient with MDS. Here we focus on the five MDS respondents and contextualize the findings with personal experiences from a patient and physician perspective. The patient perspective was provided by John Soper, PhD, DABCC, who was diagnosed with MDS in 2019. Dr Soper is a retired board-certified clinical chemist and a member of the MDS Foundation. The physician perspective was provided by Dr Ruben Mesa, Executive Director of the Mays Cancer Center at UT Health San Antonio MD Anderson. The survey responses and the accompanying patient and physician perspectives highlight the importance of open communication between patients and their healthcare provider to better serve those with MDS and improve their QOL.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":" ","pages":"31-38"},"PeriodicalIF":2.1,"publicationDate":"2022-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/54/df/prom-13-31.PMC8824781.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39620378","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"CONQUEST: A Quality Improvement Program for Defining and Optimizing Standards of Care for Modifiable High-Risk COPD Patients","authors":"Luis Alves, R. Pullen, J. Hurst, M. Miravitlles, V. Carter, Rongchang Chen, A. Couper, M. Dransfield, Alexander Evans, A. Hardjojo, David Jones, Rupert C Jones, Margee Kerr, K. Kostikas, J. Marshall, F. Martinez, M. V. van Melle, R. Murray, S. Muro, C. Nordon, M. Pollack, C. Price, Anita Sharma, D. Singh, T. Winders, D. Price","doi":"10.2147/prom.s296506","DOIUrl":"https://doi.org/10.2147/prom.s296506","url":null,"abstract":": The COllaboration on QUality improvement initiative for achieving Excellence in STandards of COPD care (CONQUEST) aims to improve the quality of COPD care in primary care. The CONQUEST target population includes patients diagnosed with COPD, and those undiagnosed but with COPD-like exacerbations, who are at high but modifiable risk of COPD exacerbations, increased morbidity, and mortality. Timely diagnosis and optimized management to reduce these risks is vital. There is a need for a quality improvement program (QIP) that enables long-term improvement of patient clinical outcomes via integration of the program into routine clinical care. Core to the CONQUEST program is the adoption of four specifically designed, globally applicable, and expert-agreed quality standards (QS) for modifiable high-risk COPD patients. Translation of the QS into clinical practice, and implementation of the QIP, is guided by the CONQUEST global operational protocol provided to sites meeting the minimum healthcare system requirements. Initial analyses of current practices are conducted to generate baseline assessments of need within healthcare systems and sites looking to implement the QIP. Implementation is supported by the provision of CONQUEST resources and tools, such as clinical decision support, that promote prompt identification and treatment of patients. Utilization of electronic medical record (EMR) and patient-reported data are integral components of the QIP. Regular, automated collection and analysis of data, combined with a cyclical review of the implementation process, will be conducted for long-term, continuous improvement and health impact evaluation. The CONQUEST QIP will be an important resource in the identification and management of patients with modifiable high-risk COPD. Embedding the CONQUEST QS into routine clinical practice with regular evaluation and feedback will result in long-term quality of care improvement.","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"1 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2022-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49450715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Discrete Choice Experiment to Derive Health Utilities for Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency in France.","authors":"Adam B Smith,&nbsp;Andria Hanbury,&nbsp;Jennifer A Whitty,&nbsp;Igor Beitia Ortiz de Zarate,&nbsp;Florence Hammes,&nbsp;Gérard de Pouvourville,&nbsp;Katharina Buesch","doi":"10.2147/PROM.S332519","DOIUrl":"https://doi.org/10.2147/PROM.S332519","url":null,"abstract":"<p><strong>Purpose: </strong>Cost-effectiveness evaluations of interventions require health utility data. However, in medical conditions, such as aromatic L-amino acid decarboxylase (AADC) deficiency, this presents problems due to the rarity of the disease. The study aim therefore was to employ a discrete choice experiment (DCE) to generate health utilities for AADC deficiency.</p><p><strong>Methods: </strong>A previous literature review, clinician and parent interviews had identified six key AADC deficiency attributes: mobility, muscle weakness, oculogyric crises (OCG), feeding ability, cognitive impairment and screaming. A representative sample of the French general population was recruited. Participants rated 5 health state vignettes describing AADC deficiency using time-trade-off (TTO) and standard gamble (SG). Additionally, participants rated the worst health state using the Health Utility Index version 3 (HUI3). Subsequently, participants completed DCE 11 choice sets. Indirect DCE part-worth utilities were converted to health utilities using the anchors from the TTO, SG and HUI3.</p><p><strong>Results: </strong>The DCE was completed online by 1001 participants (50.9% female; mean age 45.7 years). Most participants (596, 59.5%) provided consistent responses to the repeated choice task. Five models were evaluated, and one preference reversal (\"head control\"/\"sitting unaided\") was identified in all models. The rescaled utilities ranged from 0.3891 to 0.5577 (difference of 0.17 utilities) for TTO anchors corresponding to the worst (633233) and best (111111) health states. Health utilities ranged from 0.5534 to 0.7093 for the SG anchors. The disutility associated with a transition from \"no problems walking\" to \"bedridden\" was -0.0533, whereas disutility of moving from \"constant screaming\" relative to \"no screaming\" was -0.0248. The disutility associated with daily OCG was -0.0167. Disutilities for the other attributes were small although there were exceptions.</p><p><strong>Conclusion: </strong>A DCE was used to derive health utilities for AADC deficiency. These health utilities will subsequently be used in an economic model evaluating an AADC deficiency intervention.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":" ","pages":"21-30"},"PeriodicalIF":2.1,"publicationDate":"2022-01-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/f6/b8/prom-13-21.PMC8800863.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39885812","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Predictors of Non-Spontaneous Vaginal Delivery Among Mothers Who Gave Birth in Wachemo University Specialized Hospital, Hossana, Ethiopia, 2021.","authors":"Temesgen Tamirat,&nbsp;Lonsako Abute","doi":"10.2147/PROM.S343866","DOIUrl":"https://doi.org/10.2147/PROM.S343866","url":null,"abstract":"<p><strong>Introduction: </strong>Non-spontaneous vaginal delivery, such as cesarean delivery and operative vaginal deliveries, provides births other than regular vaginal pregnancy. In taking effective steps to minimize the caesarean section rate and the issues associated with it, it would be useful to examine the determinants of instrumental deliveries and their key indications. Therefore, this study aimed to determine magnitude and related factors of non-spontaneous vaginal delivery.</p><p><strong>Methods: </strong>Facility-based analytical cross-sectional study design was used. A total sample size of 383 was used. All mothers who gave birth during data collection period and fulfill inclusion criteria were included in the study. Interviewer-administered data collection method was used. Data were entered in Epi-data and exported to SPSS to analyze both descriptive and advanced analysis.</p><p><strong>Results: </strong>About 24.4% of mothers' mode of delivery was non-spontaneous vaginal delivery. Those mothers whose occupation was housewives were 2.8 times more likely to give birth through non-spontaneous vaginal delivery than mothers whose occupation was teachers (AOR = 2.8 95% CI 1.103-7.261). Mothers with grand multipara were less likely to give birth through non-spontaneous vaginal delivery than nulliparous (AOR = 0.10 95% CI 0.022-0.468) and primipara (AOR = 0.17 95% CI 0.041-0.671). Mothers with complications during pregnancy were 3 times more likely to give birth via non-spontaneous vaginal delivery than mothers without complications during pregnancy. Mothers with non-macrosomic neonates and female neonatal sex were less likely experiencing to give birth through non-spontaneous vaginal delivery as compared to their respective reference groups.</p><p><strong>Conclusion: </strong>Magnitude of non-spontaneous vaginal delivery was high in this study. Being a housewife, having complications during pregnancy, nullipara and primipara, macrosomic fetus and male neonate were associated with outcome variable. Attention should be given for the housewives, experiencing complication during pregnancy, a fetus with big weight and male neonatal sex in order to minimize risks of non-spontaneous delivery.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":" ","pages":"9-19"},"PeriodicalIF":2.1,"publicationDate":"2022-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/3f/f9/prom-13-9.PMC8789298.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39742400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Clinician and Patient Reporting of Symptomatic Adverse Events in Cancer Clinical Trials: Using CTCAE and PRO-CTCAE^® to Provide Two Distinct and Complementary Perspectives.","authors":"Lori M Minasian,&nbsp;Ann O'Mara,&nbsp;Sandra A Mitchell","doi":"10.2147/PROM.S256567","DOIUrl":"https://doi.org/10.2147/PROM.S256567","url":null,"abstract":"<p><p>Inclusion of the patient perspective in the reporting of symptomatic adverse events provides different and complementary information to clinician reporting using the Common Terminology Criteria for Adverse Events (CTCAE). The National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE^®) is designed for patients to self-report their symptomatic adverse events in a manner that complements CTCAE reporting. Using CTCAE and PRO-CTCAE together offers the potential to refine our understanding of the prevalence and trajectory of lower grade AEs that can lead to elective discontinuation of therapy and diminished quality of life. This review addresses the development of PRO-CTCAE with an emphasis on the differences between PRO-CTCAE scores and CTCAE severity grades. This distinction is important when evaluating, grading and reporting toxicity and tolerability in cancer clinical trials.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"13 ","pages":"249-258"},"PeriodicalIF":2.1,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/de/7f/prom-13-249.PMC9744864.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10363607","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Systematic Review of Patient Engagement Experiences in Brain Disorders.","authors":"Deborah Bertorello,&nbsp;Giampaolo Brichetto,&nbsp;Frans Folkvord,&nbsp;Alexandra Theben,&nbsp;Paola Zaratin","doi":"10.2147/PROM.S256396","DOIUrl":"https://doi.org/10.2147/PROM.S256396","url":null,"abstract":"<p><strong>Background: </strong>Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce.</p><p><strong>Aim: </strong>To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation.</p><p><strong>Methods: </strong>Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria.</p><p><strong>Results: </strong>In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices.</p><p><strong>Discussion: </strong>Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of \"expert patients\" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"13 ","pages":"259-272"},"PeriodicalIF":2.1,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/7a/bf/prom-13-259.PMC9758979.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10751276","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding Attitudes, Beliefs, and Behaviors Surrounding Menopause Transition: Results from Three Surveys.","authors":"Gloria Richard-Davis,&nbsp;Andrea Singer,&nbsp;Deanna D King,&nbsp;Lisa Mattle","doi":"10.2147/PROM.S375144","DOIUrl":"https://doi.org/10.2147/PROM.S375144","url":null,"abstract":"<p><strong>Purpose: </strong>To understand women's perspectives, attitudes, and beliefs surrounding menopause transition and increase understanding of digital technology use for symptom management.</p><p><strong>Patients and methods: </strong>Information was obtained using three studies of women aged 40-65 years experiencing menopause transition symptoms. The HealthyWomen online cross-sectional survey was designed to reflect an inclusive sociodemographic sample representative of the US population. BECOME was a blinded, ethnographic, qualitative research study of women's menopause transition experiences and comprised facilitator-led online asynchronous discussions, online homework entries, and audio-only teleconferences. The NODE.Health online, two-part, cross-sectional patient survey was designed to capture patient and healthcare provider (HCP) sentiment about the use of digital health technologies to address gaps in perimenopausal symptom knowledge and management.</p><p><strong>Results: </strong>The HealthyWomen survey included 1045 participants, 37 were included in BECOME, and 100 completed the NODE.Health survey. Hot flashes, night sweats, and sleep problems were the most frequently experienced symptoms in the HealthyWomen survey, and over half of participants experiencing symptoms felt the need to seek relief. Whether menopause was considered a medical problem or natural process differed by self-identified race, culture, and ethnicity, as did the likelihood of consulting a HCP over symptoms. Participants preferred to discuss menopause transition with HCPs who did not rush them, were good listeners, and had expertise in the area. Most technology experience was with health websites, but nearly half were unsatisfied with online resources describing menopause-related symptoms. Convenience, ease of use, and accessibility were the most common reasons for pursuing digital health technology.</p><p><strong>Conclusion: </strong>Factors such as cultural beliefs, values and attitudes towards menopause determine personal experiences. More open discussions with friends, family, and HCPs may raise awareness and reduce barriers to seeking help. To provide optimal care throughout the menopause transition, HCPs should consider patients' psychosocial and cultural backgrounds, and personal and subjective perspectives.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"13 ","pages":"273-286"},"PeriodicalIF":2.1,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/9a/46/prom-13-273.PMC9760047.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10763651","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}