Patient-Patient Centered Outcomes Research最新文献

{"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":"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":" ","pages":"697-710"},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461805/pdf/","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: What Can Discrete‑Choice Experiments Tell Us about Patient Preferences? An Introduction to Quantitative Analysis of Choice Data.","authors":"F Reed Johnson, Wiktor Adamowicz, Catharina Groothuis-Oudshoorn","doi":"10.1007/s40271-024-00712-8","DOIUrl":"https://doi.org/10.1007/s40271-024-00712-8","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332006","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}

{"title":"Eliciting Older Cancer Patients' Preferences for Follow-Up Care to Inform a Primary Healthcare Follow-Up Model in China: A Discrete Choice Experiment.","authors":"Jiawei Geng, Ran Li, Xinyu Wang, Rongfang Xu, Jibin Liu, Haiyan Jiang, Gaoren Wang, Therese Hesketh","doi":"10.1007/s40271-024-00697-4","DOIUrl":"10.1007/s40271-024-00697-4","url":null,"abstract":"<p><strong>Background and objectives: </strong>Increasing longevity and advances in treatment have increased the cancer burden in the elderly, resulting in complex follow-up care needs; however, in China, little is known about the follow-up care preferences of these patients. This study quantified older cancer patients' preferences for follow-up care and examined the trade-offs they are willing to make to accept an alternative follow-up model.</p><p><strong>Methods: </strong>A discrete choice experiment was conducted among inpatients aged over 60 years with breast, prostate, or colorectal cancer, at two large tertiary hospitals in Nantong, China. Preference weights for follow-up care were estimated using mixed logit analysis. Subgroup analysis and latent class analysis were used to explore preference heterogeneity.</p><p><strong>Results: </strong>Complete results were obtained from 422 patients (144 with breast cancer, 133 with prostate cancer, 145 with colorectal cancer), with a mean age of 70.81 years. Older cancer patients stated a preference for follow-up by specialists over primary healthcare (PHC) providers ( <math><mi>β</mi></math> = -1.18, 95% confidence interval -1.40 to -0.97). The provider of follow-up care services was the most valued attribute among patients with breast cancer (relative importance [RI] 37.17%), while remote contact services were prioritized by patients with prostate (RI 43.50%) and colorectal cancer (RI 33.01%). The uptake rate of an alternative care model integrating PHC increased compared with the baseline setting when patients were provided with preferred services (continuity of care, individualized care plans, and remote contact services).</p><p><strong>Conclusion: </strong>To encourage older cancer patients to use PHC-integrated follow-up care, alternative follow-up care models need to be based on patients' preferences before introducing them as a routine option.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"589-601"},"PeriodicalIF":3.4,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11343794/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140872493","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 Preference Research in Atopic Dermatitis: A Systematic Review of Quantitative Studies.","authors":"Katja C Heinz, Charlotte Beaudart, Damon Willems, Mickaël Hiligsmann","doi":"10.1007/s40271-024-00698-3","DOIUrl":"10.1007/s40271-024-00698-3","url":null,"abstract":"<p><strong>Background: </strong>Treatment preference research can support shared and informed decision making for currently available atopic dermatitis (AD) treatments, and simultaneously guide research and development for future therapies. In this systematic literature review, we aimed to provide an overview of preferences for AD treatments.</p><p><strong>Methods: </strong>This systematic literature review was conducted in the Medline and Embase (via Ovid) databases, supplemented by manual searching. Quantitative research published from 2010 to September 2023 that investigated preferences for AD treatments were included. Quality assessment was conducted by using the purpose, respondents, explanation, findings, significance checklist, and a checklist developed by the Professional Society for Health Economics and Outcomes Research.</p><p><strong>Results: </strong>In total, 207 references were screened after removing duplicates and 15 studies were included. Most studies were conducted in the US, followed by European countries. On average, people directly or indirectly affected by AD rate efficacy and treatment-related risk as the most important criteria when choosing an AD therapy. Participants are willing to increase risks in order to have a higher chance of achieving a certain benefit, e.g. reduction in itch or clearer skin. Participants have preferences for different modes of administration. On average, 68% (all full-text studies) and 87% (only discrete choice experiments [DCEs]) of quality criteria per reference were rated as fulfilled. DCEs received generally higher quality assessment scores than non-DCEs.</p><p><strong>Conclusions: </strong>This review revealed that AD treatment preference research is limited. Diverse study designs hampered comparison and synthesis of the results. We recommend conducting more DCEs in this field to increase the likelihood of AD patients receiving the therapy that best fits their individual needs and preferences.</p><p><strong>Clinical trials registration: </strong>This protocol was published in PROSPERO (ID: CRD42023468757).</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"519-535"},"PeriodicalIF":3.4,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11343911/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140900366","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":"Practices and Barriers in Developing and Disseminating Plain-Language Resources Reporting Medical Research Information: A Scoping Review.","authors":"Avishek Pal, Isabelle Arnet, Bernice Simone Elger, Tenzin Wangmo","doi":"10.1007/s40271-024-00700-y","DOIUrl":"10.1007/s40271-024-00700-y","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;The intent of plain-language resources (PLRs) reporting medical research information is to advance health literacy among the general public and enable them to participate in shared decision-making (SDM). Regulatory mandates coupled with academic and industry initiatives have given rise to an increasing volume of PLRs summarizing medical research information. However, there is significant variability in the quality, format, readability, and dissemination channels for PLRs. In this scoping review, we identify current practices, guidance, and barriers in developing and disseminating PLRs reporting medical research information to the general public including patients and caregivers. We also report on the PLR preferences of these intended audiences.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A literature search of three bibliographic databases (PubMed, EMBASE, Web of Science) and three clinical trial registries (NIH, EMA, ISRCTN registry) was performed. Snowball searches within reference lists of primary articles were added. Articles with PLRs or reporting topics related to PLRs use and development available between January 2017 and June 2023 were identified. Evidence mapping and synthesis were used to make qualitative observations. Identified PLRs were quantitatively assessed, including temporal annual trends, availability by field of medicine, language, and publisher types.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of 9116 PLRs were identified, 9041 from the databases and 75 from clinical trial registries. The final analysis included 6590 PLRs from databases and 72 from registries. Reported barriers to PLR development included ambiguity in guidance, lack of incentives, and concerns of researchers writing for the general public. Available guidance recommendations called for greater dissemination, increased readability, and varied content formats. Patients preferred visual PLRs formats (e.g., videos, comics), which were easy to access on the internet and used short jargon-free text. In some instances, older audiences and more educated readers preferred text-only PLRs. Preferences among the general public were mostly similar to those of patients. Psychology, followed by oncology, showed the highest number of PLRs, predominantly from academia-sponsored research. Text-only PLRs were most commonly available, while graphical, digital, or online formats were less available. Preferred dissemination channels included paywall-free journal websites, indexing on PubMed, third-party websites, via email to research participants, and social media.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This scoping review maps current practices, recommendations, and patients' and the general public's preferences for PLR development and dissemination. The results suggest that making PLRs available to a wider audience by improving nomenclature, accessibility, and providing translations may contribute to empowerment and SDM. Minimizing variability among available guida","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"493-518"},"PeriodicalIF":3.4,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11343906/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141328067","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":"What Can Discrete-Choice Experiments Tell Us about Patient Preferences? An Introduction to Quantitative Analysis of Choice Data.","authors":"F Reed Johnson, Wiktor Adamowicz, Catharina Groothuis-Oudshoorn","doi":"10.1007/s40271-024-00705-7","DOIUrl":"10.1007/s40271-024-00705-7","url":null,"abstract":"<p><p>This paper provides an introduction to statistical analysis of choice data using example data from a simple discrete-choice experiment (DCE). It describes the layout of the analysis dataset, types of variables contained in the dataset, and how to identify response patterns in the data indicating data quality. Model-specification options include linear models with continuous attribute levels and non-linear continuous and categorical attribute levels. Advantages and disadvantages of conditional logit, mixed logit, and latent-class analysis are discussed and illustrated using the example DCE data. Readers are provided with links to various software programs for analyzing choice data. References are provided on topics for which there currently is limited consensus and on more advanced techniques to guide readers interested in exploring choice-modeling challenges in greater depth. Supplementary materials include the simulated example data used to illustrate modeling approaches, together with R and Matlab code to reproduce the estimates shown.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141762488","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}

{"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":" ","pages":"349-362"},"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}

{"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":" ","pages":"379-395"},"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}

{"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":" ","pages":"421-439"},"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}

{"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":" ","pages":"471-479"},"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}