Patient Education and Counseling最新文献

{"title":"Trust when the healthcare ecosystem is integrated with Artificial Intelligence","authors":"Simon Ghinassi ,&nbsp;Silvia Cervia ,&nbsp;Martina Smorti","doi":"10.1016/j.pec.2025.109361","DOIUrl":"10.1016/j.pec.2025.109361","url":null,"abstract":"<div><div>Trust assumes a central role in the patient-physician relationship. However, with the advent of Artificial Intelligence (AI) medical tools in medicine the patient-physician relationship has become more complex. Given the multiple partners involved in the healthcare ecosystem, adopting a theoretical framework for analyzing trust is essential. Several models have tried to explain interpersonal trust in healthcare as a factor that predicts engagement in trusted behavior. However, these models focused on only one partner (patient, physician, or AI developer) in a trust relationship and considered only the trust expressed by that partner in the AI medical tool or in the counter-partner. To address this gap, we propose the Patient–AI medical tools–Physician Interpersonal Trust (PAIP-IT) model, which conceptualizes trusted behavior as the outcome of dynamic trust relationships: a) between the patient and the physician, b) between both the patient and the physician toward AI medical tools, c) between the patient and the physician mediated by AI medical tools. Furthermore, because these relational dynamics unfold within specific cultural, social, and institutional contexts, it is essential to also account for institutional trust.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109361"},"PeriodicalIF":3.1,"publicationDate":"2025-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145151749","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Do patients who underestimate their health decline rely more on doctors? Insights from patients in their last six months of life","authors":"Clément Meier ,&nbsp;Verónica I. Veloso ,&nbsp;Julia Strupp ,&nbsp;Marisa Martín-Roselló ,&nbsp;Pilar Barnestein-Fonseca ,&nbsp;Ida Korfage ,&nbsp;Agnes van der Heide ,&nbsp;Vilma A. Tripodoro ,&nbsp;On behalf of the iLIVE Project consortium (EU Horizon 2020 ID: 825731)","doi":"10.1016/j.pec.2025.109355","DOIUrl":"10.1016/j.pec.2025.109355","url":null,"abstract":"<div><h3>Objectives</h3><div>In the last six months of life, many patients prefer to rely on healthcare providers to make medical decisions. Understanding the factors that shape this preference is essential for enhancing communication and tailoring care to patients' needs. This study examines the association between patients' preference to delegate decisions to doctors and their expectations of health deterioration during the last phase of life.</div></div><div><h3>Methods</h3><div>Data were collected via patient-reported questionnaires from patients in the last phase of life (clinician-identified based on established end-of-life criteria) enrolled in the iLIVE project in 11 countries (2020–2023) at baseline (n = 1055) and 1-month follow-up (n = 509). Probit regression models estimated the partial associations between preference for doctors to decide and expectation of health deterioration, controlling for covariates such as age, gender, living situation, education level, main diagnosis, self-rated health, and country.</div></div><div><h3>Results</h3><div>On average, 45 % of patients expressed a preference for doctors to make all medical decisions at both baseline and follow-up. At baseline, 64.6 % expected their health to worsen (61.9 % at follow-up). Patients who did not expect their health to worsen were more likely to prefer doctors to make decisions at both baseline (Average Marginal Effect (AME) = 0.11, p &lt; 0.001) and follow-up (AME = 0.15, p &lt; 0.001).</div></div><div><h3>Conclusions</h3><div>Patients who do not expect their health to deteriorate, despite being in the last phase of life, are more likely to prefer that doctors make decisions on their behalf.</div></div><div><h3>Practice implications</h3><div>These findings highlight the need for tailored communication strategies and patient education efforts that support realistic understanding of prognosis and promote shared decision-making at the end of life.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109355"},"PeriodicalIF":3.1,"publicationDate":"2025-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145120323","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Automated production of comparison tables for shared decision making: Comparing a human-generated table (Option Grid), a search engine process, and outputs from four large language models","authors":"Padhraig Ryan ,&nbsp;Glyn Elwyn","doi":"10.1016/j.pec.2025.109356","DOIUrl":"10.1016/j.pec.2025.109356","url":null,"abstract":"<div><h3>Objectives</h3><div>To explore the ability of artificial intelligence to produce comparison tables to facilitate shared decision-making.</div></div><div><h3>Methods</h3><div>An expert human-generated comparison table (Option Grid ™) was compared to four comparison tables produced by large language models and one produced using a Google search process that a patient might undertake. Each table was prepared for a patient with osteoarthritis of the knee, considering a knee replacement. The results were compared to the Option Grid.™</div><div>The information items in each comparison table were divided into eight categories: the intervention process; benefits; side effects &amp; adverse effects; pre-operative care; post-operative care &amp; physical recovery; repeat surgery; decision-making process; and alternative interventions. We assessed the accuracy of each information item in a binary manner (accurate, inaccurate).</div></div><div><h3>Results</h3><div>OpenBioLLM-70b and two proprietary ChatGPT models generated similar frequencies of information items across most categories, but omitted information on alternative interventions. The Google search process yielded the highest number of information items (n = 41), and OpenBioLLM-8b yielded the lowest (n = 20). Accuracy, compared to the human Option Grid, was 97 % for the ChatGPT models and the open-source OpenBioLLM-70b, and 95 % for OpenBioLLM-8b and the Google search process. The human-generated Option Grid had superior readability.</div></div><div><h3>Conclusions</h3><div>Large language models produced comparison tables that are 3–5 % less accurate than a human generated Option Grid. Comparison tables produced by large language models may be less readable and require additional checking and editing.</div></div><div><h3>Practice implications</h3><div>Subject to fact-checking and feedback, large language models may have a role to play in scaling up the production of evidence-based comparison tables that could assist patients and others.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109356"},"PeriodicalIF":3.1,"publicationDate":"2025-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145120365","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Digital divide in social media use among cancer survivors and the moderation role of offline social support","authors":"Qi Chen ,&nbsp;Kirk von Sternberg ,&nbsp;Erin Donovan ,&nbsp;Lailea Noel ,&nbsp;Barbara Jones","doi":"10.1016/j.pec.2025.109358","DOIUrl":"10.1016/j.pec.2025.109358","url":null,"abstract":"<div><h3>Objectives</h3><div>Social media has transformed cancer care by expanding access to information and support, yet disparities in its use persist. This study examined 1) social media use behavior prevalence and social media engagement levels among different age and race/ethnicity cancer survivor subgroups and 2) how age and race/ ethnicity interact with offline social support and influence cancer survivors’ social media engagement.</div></div><div><h3>Methods</h3><div>We conducted a secondary cross-sectional analysis of cancer survivors using nationally representative data from the Health Information National Trends Survey 5 (Cycles 1–4; 2017–2020; n = 2579). We used weighted chi-square tests and multinomial logistic regression models to analyze the associations between age, race/ethnicity, and offline social support with social media engagement levels (none, passive, or active).</div></div><div><h3>Results</h3><div>Patterns of social media use varied significantly across age and race/ethnicity. Young adult cancer survivors had significantly higher level of active social media engagement (F=18.67, p &lt; .001) compared to other age groups. Offline social support moderated these patterns: as age increased, survivors with offline support were less likely to engage actively (RRR=.9, p &lt; .001). Hispanic survivors with offline support demonstrated significantly higher active engagement compared to White survivors (RRR=65, p &lt; .001).</div></div><div><h3>Conclusions</h3><div>Social media engagement among cancer survivors is shaped by the intersection of age, race/ethnicity, and the availability of offline social support. Offline and online support may act as complementary resources, particularly for young adults and Hispanic groups.</div></div><div><h3>Practice Implications</h3><div>Healthcare providers should assess offline social support when developing digital health interventions. Tailored strategies are needed to enhance equitable access to online health information and peer support, particularly among young adults and ethnic minority cancer survivors.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109358"},"PeriodicalIF":3.1,"publicationDate":"2025-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145109215","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A systematic review of validated instruments assessing healthcare professionals’ competence and performance for patients’ self-management support","authors":"Leila Paukkonen ,&nbsp;Kristina Mikkonen ,&nbsp;Anne Oikarinen","doi":"10.1016/j.pec.2025.109357","DOIUrl":"10.1016/j.pec.2025.109357","url":null,"abstract":"&lt;div&gt;&lt;h3&gt;Background&lt;/h3&gt;&lt;div&gt;Supporting self-management is a crucial aspect of caring for patients with chronic conditions. However, integrating self-management support into healthcare professionals' practice is known to be challenging. The growing emphasis on improving self-management support as part of quality of care provided makes it necessary to have validated instruments to assess the competence and performance of healthcare professionals in implementing self-management support.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Objectives&lt;/h3&gt;&lt;div&gt;To conduct systematic review to identify and critically appraise available validated instruments used to assess healthcare professionals’ self-assessed competence and/ or performance in providing self-management support for adult patients with chronic conditions or multimorbidity.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Methods&lt;/h3&gt;&lt;div&gt;This systematic review was conducted according to COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) methodology and complied with the PRISMA-COSMIN Reporting guidelines for systematic reviews on outcome measurement instruments 2024. The rationale and methods were prespecified and reported in a protocol that was registered with PROSPERO (CRD42024562520). Six databases (CINAHL, PubMed, Scopus, Web of Science, Medic, and Health and Psychosocial Instruments) were systematically searched. Two independent reviewers screened the articles for eligibility, extracted the data, and assessed the methodological quality of the included studies and the psychometric properties of the instruments.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Results&lt;/h3&gt;&lt;div&gt;Of the 15,139 studies screened, six met the inclusion criteria, each introducing a unique instrument. Five were original development and validation studies, while one described the adaptation of an existing instrument. Most instruments were informed by literature and expert input. Three assessed actual performance in delivering self-management support, two addressed both performance and competence, and one focused solely on competence - specifically attitudes, such as beliefs about the importance of supporting self-management. Structural validity and internal consistency were reported in all studies, with hypotheses testing for construct validity in four. Methodological quality, assessed via the COSMIN Risk of Bias checklist, was mixed, as was the quality of the instruments’ measurement properties.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Conclusions&lt;/h3&gt;&lt;div&gt;Validated instruments assessing healthcare professionals’ competence and/or performance in self-management support are limited. Due to the broad nature of self-management support, the instruments reviewed vary in their characteristics, scope, and structure. Selecting the most suitable tool depends on the specific context and purpose.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Practise implications&lt;/h3&gt;&lt;div&gt;This review supports researchers and clinicians in identifying valid and reliable instruments for practice, while also highlighting areas for further","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109357"},"PeriodicalIF":3.1,"publicationDate":"2025-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145222377","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Shared decision-making between pediatricians and children (or their parents) with chronic disease in the Maldives: A multi-center exploratory study","authors":"Ricardo O. Wijngaarde ,&nbsp;Ahmed Faisal ,&nbsp;Maahthaab Nizar ,&nbsp;Sheerena Ahmed ,&nbsp;Shelna Aisath ,&nbsp;Haifa Mohamed ,&nbsp;Dirk T. Ubbink","doi":"10.1016/j.pec.2025.109342","DOIUrl":"10.1016/j.pec.2025.109342","url":null,"abstract":"&lt;div&gt;&lt;h3&gt;Introduction&lt;/h3&gt;&lt;div&gt;Shared decision-making (SDM) is a burgeoning concept of care in the Maldives. It seems especially applicable in chronically ill children, for whom many treatment decisions are made over time. A baseline measurement of the SDM level between pediatricians and children or their parents was carried out during consultations across the Maldives, and possible influencing factors were explored.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Methods&lt;/h3&gt;&lt;div&gt;A multi-center cross-sectional observational study assessed children with a chronic disease visiting the pediatric outpatient clinic at five medical centers in the Maldives after obtaining informed consent. Two evaluators independently analyzed audio recordings of the consultations to score the level of patient involvement in decision-making using the OPTION-5 instrument. Pediatricians and patients (or their parents) scored their perceived SDM levels using the SDM-Q-Doc and SDM-Q-9 tools, respectively. Scores were expressed as percentages of the maximum score. No pediatrician received previous SDM training. Multivariable linear regression analysis was utilized to identify the influencing factors.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Results&lt;/h3&gt;&lt;div&gt;Seventy-eight consultations were audio recorded and analyzed. The mean children’s age was 6.6 years (range: 0–15 years). The median OPTION-5 score was 20 % [interquartile range (IQR) 10–25 %], ranging from 0 % to 55 %. Patients’ and pediatricians’ median SDM-Q scores were 96 % (IQR 80–100 %) and 84 % (IQR 73–93 %), respectively. Regression analysis indicated that the child’s age (p = 0.008), consultation duration (p = 0.004), and medical center (p range: 0.003–0.015) were significant independent factors influencing the SDM level. Language of consultation and disease categories (respiratory, genetic, and other diseases) were significantly (p &lt; 0.001) associated with the physicians’ perception of child/parent involvement in the decision-making process.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Discussion&lt;/h3&gt;&lt;div&gt;SDM is not widely utilized among Maldivian pediatricians and children suffering from chronic diseases and their parents. Limited knowledge and unfamiliarity among the patient/parents, hospital staff, and policy makers about the principle, evidence, and benefits of SDM, as well as the lack of SDM skills among pediatricians, are the likely reasons for the relatively low observed SDM scores as measured by the OPTION-5 tool, as opposed to the high perceived SMD levels.&lt;/div&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Conclusions&lt;/h3&gt;&lt;div&gt;The observed SDM levels in the present baseline study provided opportunities to introduce this method of care in the Maldives in areas where SDM seems an obvious approach when deciding about treatment options. SDM in Maldivian pediatric care can be improved through education about the principles and benefits of SDM, training to improve the pediatricians’ SDM, treatment risk/benefit ratio communication skills, and decision support tools to help chronically ill children and their c","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109342"},"PeriodicalIF":3.1,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145104954","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Can ChatGPT provide responses to patients for orthopaedic-related questions? A comparison between ChatGPT and medical support staff","authors":"Maud Jacobs ,&nbsp;Walter van der Weegen ,&nbsp;Hans Savelberg ,&nbsp;Rob de Bie ,&nbsp;Rienk van Beek ,&nbsp;Joost Kuipers ,&nbsp;Peter Pilot","doi":"10.1016/j.pec.2025.109333","DOIUrl":"10.1016/j.pec.2025.109333","url":null,"abstract":"<div><h3>Introduction</h3><div>Patient Engagement Platforms, particularly chat functionalities, potentially improve communication but may also heighten workload, contributing to burnout among healthcare professionals. Natural Language Processing advancements, like ChatGPT and Med-PaLM, offer human-like responses to various questions, but concerns about their use in healthcare remain. This study evaluates whether Large Language Models can respond to patient questions as well as support staff in terms of quality and empathy.</div></div><div><h3>Methods</h3><div>In this cross-sectional study, 111 patient questions on lower limb arthroplasty, answered by support staff via an app, were selected. These questions were put into ChatGPT 3.5 to generate responses, and were collected on July 2 and 3, 2024. Two blinded healthcare professionals, an orthopaedic surgeon and an anesthetist, evaluated both the responses generated by ChatGPT and support staff, on quality, empathy, and risk of potential adverse events, selecting their preferred responses and identifying what they thought was ChatGPT’s response. A Patient Panel (n = 29) also assessed responses on empathy, preference, and source of the responses.</div></div><div><h3>Results</h3><div>Fifty questions were available for a comparative analysis between ChatGPT and support staff responses. No quality difference was found (p = 0.075) between ChatGPT and support staff, though ChatGPT was rated as more empathetic (p &lt; 0.001). No difference was found between the two responses in the risk of incorrect treatment (p = 0.377). Physicians identified ChatGPT’s responses in 84–90 % of cases. The Patient Panel found ChatGPT to be more empathetic (p &lt; 0.001) but showed no preference for ChatGPT (p = 0.086). Patients accurately identified ChatGPT’s responses in 34.5 % of cases (p = 0.005). Three ChatGPT responses showed high-risk errors.</div></div><div><h3>Conclusion</h3><div>This study shows ChatGPT generated high quality and empathetic responses to patient questions about lower limb arthroplasty. Further investigation is needed to optimize clinical use, but high appreciation for ChatGPT responses highlights the potential for use in clinical practice in the near future.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109333"},"PeriodicalIF":3.1,"publicationDate":"2025-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145159990","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Information and uncertainty: Utilizing the pediatric oncology functional communication model to better understand early AYA survivorship and late effects communication.","authors":"Kendall Carpenter ,&nbsp;Catalina Berenblum Tobi ,&nbsp;Lydia Haupt Levy ,&nbsp;Anna C. Revette ,&nbsp;Lisa B. Kenney ,&nbsp;Lynda M. Vrooman ,&nbsp;Katie A. Greenzang","doi":"10.1016/j.pec.2025.109354","DOIUrl":"10.1016/j.pec.2025.109354","url":null,"abstract":"<div><h3>Objectives</h3><div>To explore the communication preferences of adolescents with cancer regarding the discussion of survivorship and late effects (LE) and to identify key communication functions and areas for improvement in LE communication.</div></div><div><h3>Methods</h3><div>This qualitative secondary analysis applied the adolescent oncology functional communication model to 17 semi-structured interviews conducted with adolescents (aged 12–22 years) to understand their LE communication preferences. Purposive sampling identified participants undergoing cancer treatment or who had completed pediatric cancer treatment within the past five years. Interviews occurred between April 2022 and April 2023; they were audio-recorded, transcribed, and individually coded. Thematic analysis identified themes that emerged within the communication functions.</div></div><div><h3>Results</h3><div>Participants identified \"exchanging information\" and \"managing uncertainty\" as critical functions in survivorship communication, but highlighted areas for improvement. Many adolescents appreciated receiving information early, however the volume of content was overwhelming, and some felt unprepared for survivorship despite information. Adolescents emphasized the importance of mental health support and peer validation, pointing to gaps in psychosocial resources and the desire for more shared experiences with fellow survivors. Modifiers to communication preferences which influenced how adolescents wanted to receive information about late effects included the phase of treatment (active treatment vs. survivorship), individual learning preferences, existing parent-child dynamics, and diagnosis/prognosis.</div></div><div><h3>Conclusions</h3><div>Utilizing communication functions as a framework allowed us to better understand adolescent preferences and identify areas for improvement within early communication about survivorship and LEs. Understanding the modifying factors that influence adolescent preferences will help tailor communication strategies to better meet their needs.</div></div><div><h3>Practice Implications</h3><div>This study applied a validated framework to survivorship and late effects communication with adolescents, a vulnerable patient population in pediatric oncology, highlighting important areas for improvement. The findings can be utilized to guide future adolescent- specific interventions aimed at improving adolescent engagement in survivorship care and risk-based screening.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109354"},"PeriodicalIF":3.1,"publicationDate":"2025-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145120320","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Predictors of health literacy among Deaf American Sign Language users","authors":"Michael M. McKee ,&nbsp;Melissa Plegue ,&nbsp;Sara Champlin ,&nbsp;Joseph Hill ,&nbsp;Tiffany Panko ,&nbsp;Lorraine R. Buis ,&nbsp;Ananda Sen ,&nbsp;Michael K. Paasche-Orlow ,&nbsp;Peter C. Hauser","doi":"10.1016/j.pec.2025.109348","DOIUrl":"10.1016/j.pec.2025.109348","url":null,"abstract":"<div><h3>Objective</h3><div>Health literacy is an important predictor of individuals’ health, medical adherence, and health-related decision making. This study investigated the predictors of health literacy among Deaf American Sign Language (ASL) users.</div></div><div><h3>Methods</h3><div>408 Deaf ASL users and 445 Hearing English speakers were administered the Newest Vital Sign, a measure of health literacy available in both English and ASL, along with assessments of language proficiency and reading skills.</div></div><div><h3>Results</h3><div>Deaf participants had 3.7 times greater odds of inadequate health literacy (95 % CI: 2.7, 4.9) compared to their hearing counterparts. Binary logistic regression revealed that Deaf participants’ ASL proficiency and English reading grade equivalent explained 34.2 % (Nagelkerke <em>R</em>^<em>2</em>) of the variance in health literacy, χ²(2) = 101.520, <em>p</em> &lt; .001. Among hearing participants, by contrast, English proficiency and English reading grade equivalent explained 47.8 % of the variance in health literacy, χ²(2) = 171.071, <em>p</em> &lt; .001.</div></div><div><h3>Conclusions</h3><div>Deaf people are at risk for having greater difficulty to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.</div></div><div><h3>Practice implications</h3><div>Health professionals and health systems should allocate resources to mitigate health literacy barriers among Deaf people and make health information more available in ASL.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"142 ","pages":"Article 109348"},"PeriodicalIF":3.1,"publicationDate":"2025-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145120321","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Agency in action: Engaging patient participation in research","authors":"Jillianne Code,&nbsp;Heather Lannon,&nbsp;Aimee Lutrin","doi":"10.1016/j.pec.2025.109353","DOIUrl":"10.1016/j.pec.2025.109353","url":null,"abstract":"<div><h3>Objectives</h3><div>To examine how patients with cardiovascular disease perceive and enact agency in research partnerships through decision-making, communication, health literacy, and sustained engagement.</div></div><div><h3>Methods</h3><div>This qualitative study involved semi-structured interviews with 11 patient partners who participated in a national Masterclass on cardiovascular research. The Masterclass was designed to strengthen patient capacity for research involvement through education, mentorship, and collaborative activities. Interview transcripts were analyzed thematically, guided by the Patient Agency in Research (PAIR) framework, which conceptualizes agency as intentional, self-reflective action expressed through individual, proxy, and collective modes.</div></div><div><h3>Results</h3><div>Participants reported increased confidence, research knowledge, and intentionality in their roles. They described navigating power imbalances, countering tokenism, and advocating for inclusive research cultures. Key findings included self-directed learning, empowerment, psychological safety, and the importance of trust and transparent communication.</div></div><div><h3>Conclusion</h3><div>Agency is a core element of meaningful patient engagement but must be deliberately cultivated through education, inclusive practices, and ongoing relational support.</div></div><div><h3>Practice implications</h3><div>Programs like the Masterclass can activate and strengthen patient agency, enabling individuals with lived experience to shape research in ways that are personally meaningful and scientifically impactful. By investing in patient capacity and fostering equitable research environments, institutions can move engagement beyond tokenism and toward partnerships that reshape the purpose—and the practice—of health research.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"141 ","pages":"Article 109353"},"PeriodicalIF":3.1,"publicationDate":"2025-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145092926","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}