Patient-Patient Centered Outcomes Research最新文献

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Preferences of Recent Mums in Remote and Rural Areas for Type of Intrapartum Care: A Discrete Choice Experiment. 偏远农村地区新妈妈对产前护理类型的偏好:离散选择实验
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-16 DOI: 10.1007/s40271-024-00704-8
Luis E Loría-Rebolledo, Hugo C van Woerden, Helen Bryers, Seda Erdem, Verity Watson
{"title":"Preferences of Recent Mums in Remote and Rural Areas for Type of Intrapartum Care: A Discrete Choice Experiment.","authors":"Luis E Loría-Rebolledo, Hugo C van Woerden, Helen Bryers, Seda Erdem, Verity Watson","doi":"10.1007/s40271-024-00704-8","DOIUrl":"https://doi.org/10.1007/s40271-024-00704-8","url":null,"abstract":"<p><strong>Background and objectives: </strong>Pregnant women living in rural areas considering their preferred place of birth may have to 'trade-off' travel time/distance and other attributes of care (e.g. the full choice of birthplace options is rarely available locally). This study assesses the preferences and trade-offs of recent mothers who live in remote and rural areas of Great Britain.</p><p><strong>Methods: </strong>An online survey, informed by qualitative research, was administered to women living in rural areas who had given birth in the preceding 3 years. The survey included a discrete choice experiment (DCE) to elicit women's preferences and trade-offs for place of birth. The DCE presented women with a series of eight choice tasks in which place of birth was defined by four attributes: (1) type of facility, (2) familiarity with staff, (3) understanding options and feel relaxed and reassured and (4) the travel time to the place of intrapartum care. DCE data were analysed using an error components logit model to identify preferences.</p><p><strong>Results: </strong>Across 251 survey responses, holding everything else equal, respondents preferred: intrapartum care in locations with more specialist staff and equipment, locations where they understood their options and felt reassured and where travel time was minimal. Women were willing to travel (92-183 min) to a well-staffed and equipped facility if they understood their options and felt relaxed and reassured. Willingness to travel was reduced if the care received at the specialist facility was such that they did not understand their options and felt tense and powerless (41-132 min).</p><p><strong>Conclusion: </strong>These insights into the preferences of recent mums from remote and rural areas could inform future planning of rural intrapartum care.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621786","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Young People's Barriers and Facilitators of Engagement with Web-Based Mental Health Interventions for Anxiety and Depression: A Qualitative Study. 年轻人参与基于网络的焦虑和抑郁心理健康干预的障碍和促进因素:定性研究。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-13 DOI: 10.1007/s40271-024-00707-5
Thi Quynh Anh Ho, Lidia Engel, Glenn Melvin, Long Khanh-Dao Le, Ha N D Le, Cathrine Mihalopoulos
{"title":"Young People's Barriers and Facilitators of Engagement with Web-Based Mental Health Interventions for Anxiety and Depression: A Qualitative Study.","authors":"Thi Quynh Anh Ho, Lidia Engel, Glenn Melvin, Long Khanh-Dao Le, Ha N D Le, Cathrine Mihalopoulos","doi":"10.1007/s40271-024-00707-5","DOIUrl":"https://doi.org/10.1007/s40271-024-00707-5","url":null,"abstract":"<p><strong>Background: </strong>The prevalence of anxiety and depressive symptoms in young people have increased in many countries around the world. Web-based mental health interventions (or W-MHIs) have the potential to reduce anxiety and depression symptoms for young people. Although W-MHIs have become more widely used by young people since the coronavirus disease 2019 (COVID-19) pandemic, real-world engagement in these W-MHIs has remained low compared with engagement reported in research studies. Moreover, there are limited studies examining factors influencing engagement with W-MHIs in the post-COVID-19 pandemic years.</p><p><strong>Objective: </strong>This study aims to explore barriers and facilitators of engagement with W-MHIs for anxiety and depression among young people.</p><p><strong>Method: </strong>Seventeen semi-structured interviews and one focus group with three participants were conducted online via Zoom between February and March 2023. Participants were young people aged 18-25 years who had self-reported experience of anxiety and/or depression in the past 6 months, lived in Australia, and considered using W-MHIs to manage their anxiety and/or depression symptoms. Inductive thematic analysis was performed to understand the key barriers and facilitators of young people's engagement with W-MHIs.</p><p><strong>Results: </strong>Both individual- and intervention-related factors influenced young people's engagement with W-MHIs. Facilitators of engagement included personal trust and beliefs in W-MHIs, ability to contact a health professional, programme suitability (e.g., affordability, content aligning with user needs), programme usability (e.g., user interface), and accessibility of the online platform. Barriers included concerns about online security, lack of human interaction and immediate responses from health professionals (if any), and negative experience with mental health programmes. Participants expressed greater willingness to pay if they could contact health professionals during the programme.</p><p><strong>Conclusion: </strong>Better promotion strategies for mental health and W-MHI awareness are needed to increase the perceived importance and priority of mental health interventions among young people. Young people should be involved in the W-MHI co-design to enhance the programme suitability and usability for young people, fostering their engagement with W-MHIs.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141604464","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Preferences for the Societal Impacts of a Pandemic when it Transitions into an Endemic: A Discrete Choice Experiment. 当流行病转变为地方病时对其社会影响的偏好:离散选择实验。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-09 DOI: 10.1007/s40271-024-00701-x
Niek Mouter, Tom Geijsen, Aylin Munyasya, Jose Ignacio Hernandez, Daniel Korthals, Marijn Stok, Ellen Uiters, Marijn de Bruin
{"title":"Preferences for the Societal Impacts of a Pandemic when it Transitions into an Endemic: A Discrete Choice Experiment.","authors":"Niek Mouter, Tom Geijsen, Aylin Munyasya, Jose Ignacio Hernandez, Daniel Korthals, Marijn Stok, Ellen Uiters, Marijn de Bruin","doi":"10.1007/s40271-024-00701-x","DOIUrl":"https://doi.org/10.1007/s40271-024-00701-x","url":null,"abstract":"<p><strong>Background: </strong>The stage of the pandemic significantly affects people's preferences for (the societal impacts of) COVID-19 policies. No discrete choice experiments were conducted when the COVID-19 pandemic was in a transition phase.</p><p><strong>Objectives: </strong>This is the first study to empirically investigate how citizens weigh the key societal impacts of pandemic policies when the COVID-19 pandemic transitions into an endemic.</p><p><strong>Methods: </strong>We performed two discrete choice experiments among 2181 Dutch adults that included six attributes: COVID-19 deaths, physical health problems, mental health problems, financial problems, surgery delays and the degree to which individual liberties are restricted. We used latent class choice models to identify heterogeneous preferences for the impacts of COVID-19 measures across different groups of respondents.</p><p><strong>Results: </strong>A large majority of the participants in this study was willing to accept deaths to avoid that citizens experience physical complaints, mental health issues, financial problems and the postponement of surgeries. The willingness to tolerate COVID-19 deaths to avoid these societal impacts differed substantially between participants. When participants were provided with information about the stringency of COVID-19 measures, they assigned relatively less value to preventing the postponement of non-urgent surgeries for 1-3 months across all classes.</p><p><strong>Conclusions: </strong>Having gone through a pandemic, most Dutch citizens clearly prefer pandemic policies that consider citizens' financial situations, physical problems, mental health problems and individual liberties, alongside the effects on excess mortality and pressure on healthcare.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141560311","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Role of Patient-Reported Outcomes to Measure Treatment Satisfaction in Drug Development. 患者报告结果在药物开发中衡量治疗满意度的作用。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-08 DOI: 10.1007/s40271-024-00702-w
Carolina Navas, Alexandra Palmer Minton, Ana Maria Rodriguez-Leboeuf
{"title":"The Role of Patient-Reported Outcomes to Measure Treatment Satisfaction in Drug Development.","authors":"Carolina Navas, Alexandra Palmer Minton, Ana Maria Rodriguez-Leboeuf","doi":"10.1007/s40271-024-00702-w","DOIUrl":"https://doi.org/10.1007/s40271-024-00702-w","url":null,"abstract":"<p><p>Treatment satisfaction is a person's rating of his or her treatment experience, including processes and outcomes. It is directly related to treatment adherence, which may be predictive of treatment effectiveness in clinical and real-world research. Consequently, patient-reported outcome (PRO) instruments have been developed to incorporate patient experience throughout various stages of drug development and routine care. PRO instruments enable clinicians and researchers to evaluate and compare treatment satisfaction data in different clinical settings. It is important to select fit-for-purpose PRO instruments that have demonstrated adequate levels of reliability, validity, and sensitivity to change to support their use. Some of these instruments are unidimensional while some are multidimensional; some are generic and can be applied across different therapeutic areas, while others have been developed for use in a specific treatment modality or condition. This article describes the role of treatment satisfaction in drug development as well as regulatory and Health Technology Assessment (HTA) decision making and calls for more widespread use of carefully selected treatment satisfaction PRO instruments in early- and late-phase drug development.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141555860","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Discrete Choice Experiments to Elicit Patient Preferences for the Treatment of Major Depressive Disorder: A Systematic Review. 通过离散选择实验激发患者对重度抑郁障碍治疗的偏好:系统回顾。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-05 DOI: 10.1007/s40271-024-00706-6
Susan dosReis, Dafne Espinal Pena, Alexandra Fincannon, Emily F Gorman, Alejandro Amill-Rosario
{"title":"Discrete Choice Experiments to Elicit Patient Preferences for the Treatment of Major Depressive Disorder: A Systematic Review.","authors":"Susan dosReis, Dafne Espinal Pena, Alexandra Fincannon, Emily F Gorman, Alejandro Amill-Rosario","doi":"10.1007/s40271-024-00706-6","DOIUrl":"https://doi.org/10.1007/s40271-024-00706-6","url":null,"abstract":"<p><strong>Background: </strong>Individual preferences for treatment options for major depressive disorder can impact therapeutic decision making, adherence, and ultimately outcomes.</p><p><strong>Objectives: </strong>This systematic review of discrete choice experiments (DCEs) on patient preferences for major depressive disorder treatment assessed the range of DCE applications in major depressive disorder to document patient stakeholder involvement in DCE development and to identify the relative importance of treatment attributes.</p><p><strong>Methods: </strong>We searched MEDLINE via Ovid (1946-present), EMBASE (Elsevier interface), Cochrane Central Register of Controlled Trials (Wiley interface), and PsycINFO (EBSCO interface) databases on 29 May, 2024. Covidence software facilitated the review, which four members completed independently. The review was conducted in two phases: title and abstract and then a full-text review. We used an established quality reporting tool to evaluate selected articles. The Covidence extraction tool was adapted for this study.</p><p><strong>Results: </strong>A total of 19 articles were included in this review. Most studies elicited preferences for depression treatment (63.2%) and care delivery (10.5%). Two assessed willingness to pay. Individuals prefer a combination of medicine and counseling over each treatment alone. Treatment efficacy, relapse prevention, and symptom relief were among the most important attributes. Individuals were willing to accept larger risks to achieve symptom improvement. Few studies examined preference heterogeneity with latent subgroups.</p><p><strong>Conclusions: </strong>Discrete choice experiments for major depressive disorder treatment preferences enable an assessment of trade-offs for first-line therapeutic options. Patient stakeholders are infrequently involved as collaborators in the DCE development. Few examined preference heterogeneity among subgroups.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141538911","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Differences in Preferences for Drug Therapy Between Patients with Metastatic Versus Early-Stage Breast Cancer: A Systematic Literature Review. 转移性乳腺癌患者与早期乳腺癌患者在药物治疗偏好上的差异:系统性文献综述。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-01 Epub Date: 2024-03-07 DOI: 10.1007/s40271-024-00679-6
Lilly Sophia Brandstetter, Steffi Jírů-Hillmann, Stefan Störk, Peter Ulrich Heuschmann, Achim Wöckel, Jens-Peter Reese
{"title":"Differences in Preferences for Drug Therapy Between Patients with Metastatic Versus Early-Stage Breast Cancer: A Systematic Literature Review.","authors":"Lilly Sophia Brandstetter, Steffi Jírů-Hillmann, Stefan Störk, Peter Ulrich Heuschmann, Achim Wöckel, Jens-Peter Reese","doi":"10.1007/s40271-024-00679-6","DOIUrl":"10.1007/s40271-024-00679-6","url":null,"abstract":"<p><strong>Introduction: </strong>Compared with early stages (eBC) metastatic BC (mBC) is incurable. In mBC, aggressive treatment may increase the duration of survival but may also cause severe treatment side effects. A better understanding how patients with BC value different aspects of drug therapy might improve treatment effectiveness, satisfaction and adherence. This systematic review aims to identify and summarise studies evaluating patient preferences for drug therapy of BC and to compare preferences of patients with eBC and mBC.</p><p><strong>Methods: </strong>The systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The electronic databases PubMed and Web of Science were searched on 22 June 2023. All studies published to this point were considered. Original studies reporting patient preferences on BC drug therapy determined by any type of choice experiment were eligible. A narrative synthesis of the effect measures presented as relative importance ratings, trade-offs (required benefit to make a therapy worthwhile) or monetary values of the treatment attributes was reported for each study. Risk of bias assessment for individual studies was performed using the checklist for observational studies from the STROBE Statement and the checklist from 'Conducting Discrete Choice Experiments to Inform Healthcare Decision Making: A User's Guide'. The study protocol was registered at the PROSPERO database (CRD42022377031).</p><p><strong>Results: </strong>A total of 34 studies met the inclusion criteria were included in the analysis evaluating the preferences of patients with eBC (n = 18), mBC (n = 10) or any stage BC (n = 6) on, for example, chemotherapy, endocrine therapy, hormonal therapy or CKD4/6-inhibitors using different types of choice experiments. Regardless of the stage, most patients valued treatment effectiveness in terms of survival gains higher than potential adverse drug reactions (ADRs). Treatment cost, mode of administration, treatment regimen and monitoring aspects were considered as least important treatment attributes. In addition, preferences concerning 16 different types of ADRs were described, showing high heterogeneity within BC stages. Yet, comparable results across BC stages were observed.</p><p><strong>Conclusions: </strong>Regardless of the stage, patients with BC consistently valued survival gains as the most important attribute and were willing to accept the risk of potential ADRs. Incorporating patient preferences in shared decision making may improve the effectiveness of interventions by enhancing adherence to drug therapy in patients suffering from BC.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11190003/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140050922","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}
引用次数: 0
Studying How Patient Engagement Influences Research: A Mixed Methods Study. 研究患者参与如何影响研究:混合方法研究。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-01 Epub Date: 2024-03-15 DOI: 10.1007/s40271-024-00685-8
Deborah A Marshall, Nitya Suryaprakash, Danielle C Lavallee, Tamara L McCarron, Sandra Zelinsky, Karis L Barker, Gail MacKean, Maria J Santana, Paul Moayyedi, Stirling Bryan
{"title":"Studying How Patient Engagement Influences Research: A Mixed Methods Study.","authors":"Deborah A Marshall, Nitya Suryaprakash, Danielle C Lavallee, Tamara L McCarron, Sandra Zelinsky, Karis L Barker, Gail MacKean, Maria J Santana, Paul Moayyedi, Stirling Bryan","doi":"10.1007/s40271-024-00685-8","DOIUrl":"10.1007/s40271-024-00685-8","url":null,"abstract":"<p><strong>Background: </strong>There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence.</p><p><strong>Methods: </strong>We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study.</p><p><strong>Results: </strong>PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable.</p><p><strong>Conclusion: </strong>Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11189989/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140137507","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}
引用次数: 0
Health-Related Quality-of-Life Impacts Associated with Transfusion-Dependent β-Thalassemia in the USA and UK: A Qualitative Assessment. 美国和英国与输血依赖型 β 地中海贫血症相关的健康相关生活质量影响:定性评估。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-01 Epub Date: 2024-03-26 DOI: 10.1007/s40271-024-00678-7
Jennifer Drahos, Adriana Boateng-Kuffour, Melanie Calvert, Laurice Levine, Neelam Dongha, Nanxin Li, Zahra Pakbaz, Farrukh Shah, Antony P Martin
{"title":"Health-Related Quality-of-Life Impacts Associated with Transfusion-Dependent β-Thalassemia in the USA and UK: A Qualitative Assessment.","authors":"Jennifer Drahos, Adriana Boateng-Kuffour, Melanie Calvert, Laurice Levine, Neelam Dongha, Nanxin Li, Zahra Pakbaz, Farrukh Shah, Antony P Martin","doi":"10.1007/s40271-024-00678-7","DOIUrl":"10.1007/s40271-024-00678-7","url":null,"abstract":"<p><strong>Background: </strong>Individuals living with transfusion-dependent β-thalassemia (TDT) experience reduced health-related quality of life due to fatigue and chronic pain, which cause disruptions to daily life. Currently, limited qualitative data exist that describe these impacts.</p><p><strong>Objective: </strong>This study aimed to examine the ways in which symptoms and current treatments of TDT impact health-related quality of life, to holistically describe the humanistic burden of TDT, and to identify the unmet needs of individuals living with TDT.</p><p><strong>Methods: </strong>Adults (aged ≥ 18 years) with TDT and caregivers of adolescents (aged 12‒17 years) with TDT participated in semi-structured one-on-one virtual interviews and focus group discussions. Interviews were conducted in the USA and UK and lasted approximately 60 minutes. After transcription, the interviews were analyzed thematically using a framework approach.</p><p><strong>Results: </strong>A total of ten interviews/focus group discussions (six interviews and four focus group discussions) were conducted with 14 adults with TDT and two caregivers of adolescents with TDT. A framework analysis revealed five themes describing health-related quality of life (negative impacts on daily activities, social life, family life, work and education, and psychological well-being) and three themes describing the lived experience of TDT (impact of red blood cell transfusions and iron chelation therapy, treatment, and stigma). Physical, psychological, and treatment-related factors contributed to negative impacts on daily activities, social and family life, and work and education. Concerns about reduced lifespan, relationships and family planning, and financial independence were detrimental to participants' mental well-being. Participants reported having high resilience to the many physical and psychological challenges of living with TDT. A lack of TDT-specific knowledge among healthcare professionals, particularly regarding chronic pain associated with the disease, left some participants feeling ignored or undermined. Additionally, many participants experienced stigma and were reluctant to disclose their disease to others.</p><p><strong>Conclusions: </strong>Individuals living with TDT experience substantial negative impacts on health-related quality of life that disrupt their daily lives, disruptions that are intensified by inadequate healthcare interactions, demanding treatment schedules, and stigma. Our study highlights the unmet needs of individuals living with TDT, especially for alternative treatments that reduce or eliminate the need for red blood cell transfusions and iron chelation therapy.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11189963/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140295255","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}
引用次数: 0
Exploring Consumers' Motivations and Experiences of Engaging as Partners in Cancer Research. 探索消费者作为合作伙伴参与癌症研究的动机和经验。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-01 Epub Date: 2024-02-24 DOI: 10.1007/s40271-023-00667-2
Jamie L Waterland, Cassandra Beer, Rowan Forbes Shepherd, Laura E Forrest
{"title":"Exploring Consumers' Motivations and Experiences of Engaging as Partners in Cancer Research.","authors":"Jamie L Waterland, Cassandra Beer, Rowan Forbes Shepherd, Laura E Forrest","doi":"10.1007/s40271-023-00667-2","DOIUrl":"10.1007/s40271-023-00667-2","url":null,"abstract":"<p><strong>Background and objective: </strong>Consumer engagement improves research quality and relevance but can be difficult to implement. This study aimed to explore the motivations and understand the barriers, if any, experienced by consumers before and when partnering with cancer research teams.</p><p><strong>Methods: </strong>Semi-structured interviews were conducted with consumers and the results analysed thematically. Two groups were recruited: consumers who were members of the consumer registry and patients who did not have previous experience of being a consumer in a researcher partnership.</p><p><strong>Results: </strong>Twenty-one interviews were conducted with a total of 22 participants aged between 26 and 74 years. Consumers motivation was driven by altruism to help others and personal benefits. Barriers to beginning and maintaining consumer engagement included consumers' perceptions of being appreciated by researchers and meaningful communication between researchers and consumers.</p><p><strong>Conclusions: </strong>Australian policy has made important steps towards consumer engagement in research. This study showed that demonstrating an appreciation for consumers and effective communication are key areas to consider when designing implementation strategies of these policies in the cancer research space in the future.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11189992/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139944614","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}
引用次数: 0
What Breast Cancer Screening Program do Rural Women Prefer? A Discrete Choice Experiment in Jiangsu, China. 农村妇女更青睐哪种乳腺癌筛查方案?中国江苏的离散选择实验。
IF 3.6 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-01 Epub Date: 2024-03-14 DOI: 10.1007/s40271-024-00684-9
Yanjun Sun, Yiping Wang, Huiying Zhang, Zhiqing Hu, Yuhao Ma, Yuan He
{"title":"What Breast Cancer Screening Program do Rural Women Prefer? A Discrete Choice Experiment in Jiangsu, China.","authors":"Yanjun Sun, Yiping Wang, Huiying Zhang, Zhiqing Hu, Yuhao Ma, Yuan He","doi":"10.1007/s40271-024-00684-9","DOIUrl":"10.1007/s40271-024-00684-9","url":null,"abstract":"<p><strong>Background: </strong>Chinese rural women aged 35-64 years are encouraged to complete breast cancer screening (BCS) free of charge. However, it is challenging to reach a satisfying BCS uptake rate. In this study, rural women's preferences and preferences heterogeneity were measured for the development of strategies to enhance participation in BCS.</p><p><strong>Methods: </strong>A cross-sectional survey with a discrete choice experiment (DCE) was conducted via convenience sampling via face-to-face interviews in Jiangsu, China. Six DCE attributes were identified through a systematic literature review; our previous study of Chinese rural women's BCS intentions; a qualitative work involving in-depth interviews with rural women (n = 13), medical staff (n = 4), and health care managers (n = 2); and knowledge of realistic and actionable policy. The D-efficient design was generated using Ngene 1.3.0. A mixed logit model (MXL) in Stata 18.0 was used to estimate the main effect of attribute levels on rural women's preferences. The relative importance and willingness to utilize BCS services (WTU) were also estimated. The heterogeneous preferences were analyzed by a latent class model (LCM). Sociodemographic status was used to predict the characteristics of class membership. The WTU for different classes was also calculated.</p><p><strong>Results: </strong>A total of 451 rural women, aged 35-64 years, were recruited. The MXL results revealed that the screening interval (SI) was the most important attribute for rural women with regard to utilizing BCS services, followed by the level of screening, the attitude of medical staff, ways to get knowledge and information, people who recommend screening, and time spent on screening (TSS). Rural women preferred a BCS service with a shorter TSS; access to knowledge and information through multiple approaches; a shorter SI; a recommendation from medical staff or workers from the village or community, and others; the enthusiasm of medical staff; and medical staff with longer tenures in the field. Two classes named \"process driven\" and \"efficiency driven\" were identified by the preference heterogeneity analysis of the LCM.</p><p><strong>Conclusion: </strong>There is a higher uptake of breast cancer screening when services are tailored to women's preferences. The screening interval was the most important attribute for rural women in China with a preference for a yearly screening interval versus longer intervals.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140133220","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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