Patient-Patient Centered Outcomes Research最新文献

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Preferences for Neurodevelopmental Follow-Up Care for Children: A Discrete Choice Experiment. 对儿童神经发育后续护理的偏好:离散选择实验。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-11-01 Epub Date: 2024-08-29 DOI: 10.1007/s40271-024-00717-3
Pakhi Sharma, Sanjeewa Kularatna, Bridget Abell, Steven M McPhail, Sameera Senanayake
{"title":"Preferences for Neurodevelopmental Follow-Up Care for Children: A Discrete Choice Experiment.","authors":"Pakhi Sharma, Sanjeewa Kularatna, Bridget Abell, Steven M McPhail, Sameera Senanayake","doi":"10.1007/s40271-024-00717-3","DOIUrl":"10.1007/s40271-024-00717-3","url":null,"abstract":"<p><strong>Introduction: </strong>Identifying and addressing neurodevelopmental delays in children can be challenging for families and the healthcare system. Delays in accessing services and early interventions are common. The design and delivery of these services, and associated outcomes for children, may be improved if service provision aligns with families' needs and preferences for receiving care. The aim of this study is to identify families' preferences for neurodevelopmental follow-up care for children using an established methodology.</p><p><strong>Methods: </strong>We used a discrete choice experiment (DCE) to elicit families' preferences. We collected data from families and caregivers of children with neurodevelopmental needs. The DCE process included four stages. In stage 1, we identified attributes and levels to be included in the DCE using literature review, interviews, and expert advice. The finalised attributes were location, mode of follow-up, out-of-pocket cost per visit, mental health counselling for parents, receiving educational information, managing appointments, and waiting time. In stage 2, we generated choice tasks that contained two alternatives and a 'neither' option for respondents to choose from, using a Bayesian d-efficient design. These choice tasks were compiled in a survey that also included demographic questions. We conducted pre- and pilot tests to ensure the functionality of the survey and obtain priors. In stage 3, the DCE survey was administered online. We received 301 responses. In stage 4, the analysis was conducted using a latent class model. Additionally, we estimated the relative importance of attributes and performed a scenario analysis.</p><p><strong>Results: </strong>Two latent classes were observed. More families with full-time employees, higher incomes, postgraduate degrees, and those living in metropolitan areas were in class 1 compared with class 2. Class 1 families preferred accessing local public health clinics, face-to-face follow-up, paying AUD100 to AUD500, mental health support, group educational activities, health service-initiated appointments, and waiting < 3 months. Class 2 families disliked city hospitals when compared with private, preferred paying AUD100 or no cost, and had similar preferences regarding mental health support and wait times as class 1. However, no significant differences were noted in follow-up modality, receiving educational information, and appointment management. The relative importance estimation suggested that location was most important for class 1 (28%), whereas for class 2, cost accounted for nearly half of the importance when selecting an alternative. The expected uptake of follow-up care, estimated under three different hypothetical scenarios, may increase by approximately 24% for class 2 if an 'ideal' scenario taking into account preferences was implemented.</p><p><strong>Conclusion: </strong>This study offers insights into aspects that may be prioritised by ","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"645-662"},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461776/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114561","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
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 : 2024-11-01 Epub 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":"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":" ","pages":"663-672"},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","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
Appropriateness of the EQ-HWB for Use in Residential Aged Care: A Proxy Perspective. EQ-HWB 在养老院护理中的适用性:代理视角。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-11-01 Epub Date: 2024-09-05 DOI: 10.1007/s40271-024-00715-5
Lidia Engel, Cate Bailey, Ekaterina Bogatyreva, Frances Batchelor, Nancy Devlin, Briony Dow, Andrew S Gilbert, Brendan Mulhern, Rosalie Viney, Tessa Peasgood
{"title":"Appropriateness of the EQ-HWB for Use in Residential Aged Care: A Proxy Perspective.","authors":"Lidia Engel, Cate Bailey, Ekaterina Bogatyreva, Frances Batchelor, Nancy Devlin, Briony Dow, Andrew S Gilbert, Brendan Mulhern, Rosalie Viney, Tessa Peasgood","doi":"10.1007/s40271-024-00715-5","DOIUrl":"10.1007/s40271-024-00715-5","url":null,"abstract":"<p><strong>Background and objective: </strong>The EQ Health and Wellbeing (EQ-HWB) is a new generic quality-of-life measure for use in evaluating interventions in health, public health and social care. This study aimed to explore proxies' views regarding the appropriateness of the EQ-HWB for measuring residents' quality of life living in residential aged care facilities.</p><p><strong>Methods: </strong>Qualitative think-aloud and semi-structured interviews were conducted with family members and aged care staff across three facilities in Melbourne, Australia. Proxies completed the 25-item EQ-HWB proxy version 2 (i.e. proxy-person perspective) whilst talking through the reasons for choosing their response. All interviews were audio-recorded and transcribed verbatim. A thematic analysis was used for data analysis.</p><p><strong>Results: </strong>The sample included 29 proxies; nine family members and 20 aged care staff. The first theme summarised proxies' ability to proxy report residents' health and well-being using the EQ-HWB, which highlighted challenges with adherence to the proxy perspective, proxies' limited knowledge about residents, disagreement with residents' self-evaluation and use of heuristics. The second theme reflected feedback on the suitability of the EQ-HWB for use in residential aged care. Although proxies perceived that the EQ-HWB covered important domains, there were concerns about ambiguity, inappropriate examples, double-barrelled items and perceived repetition. Suggestions were made to improve the response options, comprehensiveness, recall period, layout and instructions of the questionnaire.</p><p><strong>Conclusions: </strong>While the EQ-HWB captures domains relevant to residential aged care, modifications to item wording and examples are necessary to improve its appropriateness. Use of the proxy-person perspective revealed some challenges that require further consideration.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"673-683"},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461598/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142134426","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
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 : 2024-11-01 Epub 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":"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}
引用次数: 0
Correction: What Can Discrete‑Choice Experiments Tell Us about Patient Preferences? An Introduction to Quantitative Analysis of Choice Data. 更正:离散选择实验能告诉我们关于患者偏好的什么信息?选择数据定量分析入门》。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-09-26 DOI: 10.1007/s40271-024-00712-8
F Reed Johnson, Wiktor Adamowicz, Catharina Groothuis-Oudshoorn
{"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}
引用次数: 0
Eliciting Older Cancer Patients' Preferences for Follow-Up Care to Inform a Primary Healthcare Follow-Up Model in China: A Discrete Choice Experiment. 激发老年癌症患者对随访护理的偏好,为中国基层医疗随访模式提供参考:离散选择实验。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-09-01 Epub Date: 2024-05-03 DOI: 10.1007/s40271-024-00697-4
Jiawei Geng, Ran Li, Xinyu Wang, Rongfang Xu, Jibin Liu, Haiyan Jiang, Gaoren Wang, Therese Hesketh
{"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}
引用次数: 0
Treatment Preference Research in Atopic Dermatitis: A Systematic Review of Quantitative Studies. 特应性皮炎治疗偏好研究:定量研究的系统回顾。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-09-01 Epub Date: 2024-05-09 DOI: 10.1007/s40271-024-00698-3
Katja C Heinz, Charlotte Beaudart, Damon Willems, Mickaël Hiligsmann
{"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}
引用次数: 0
Practices and Barriers in Developing and Disseminating Plain-Language Resources Reporting Medical Research Information: A Scoping Review. 开发和传播报告医学研究信息的通俗语言资源的做法和障碍:范围审查》。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-09-01 Epub Date: 2024-06-15 DOI: 10.1007/s40271-024-00700-y
Avishek Pal, Isabelle Arnet, Bernice Simone Elger, Tenzin Wangmo
{"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}
引用次数: 0
What Can Discrete-Choice Experiments Tell Us about Patient Preferences? An Introduction to Quantitative Analysis of Choice Data. 离散选择实验对患者偏好有何启示?选择数据定量分析入门》。
IF 3.4 3区 医学
Patient-Patient Centered Outcomes Research Pub Date : 2024-07-24 DOI: 10.1007/s40271-024-00705-7
F Reed Johnson, Wiktor Adamowicz, Catharina Groothuis-Oudshoorn
{"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}
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":" ","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}
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