Pub Date : 2026-01-22DOI: 10.1016/j.pec.2026.109495
Peter Pype , Kristien Coteur , Claudia Kiessling , Maria Magdalena Bujnowska-Fedak , Yvonne Finn , Zoi Tsimtsiou , Wiebke Frerichs
{"title":"From consensus to action: Innovative assessment strategies for interprofessional communication in health professions education","authors":"Peter Pype , Kristien Coteur , Claudia Kiessling , Maria Magdalena Bujnowska-Fedak , Yvonne Finn , Zoi Tsimtsiou , Wiebke Frerichs","doi":"10.1016/j.pec.2026.109495","DOIUrl":"10.1016/j.pec.2026.109495","url":null,"abstract":"","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109495"},"PeriodicalIF":3.1,"publicationDate":"2026-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146173725","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}
Pub Date : 2026-01-17DOI: 10.1016/j.pec.2026.109492
Jessica Hahne, Brian D. Carpenter
Objective
To examine the influence of the emerging use of generative artificial intelligence (GenAI) within electronic health records and among the public on the patient-centeredness of communication in healthcare.
Method
In this scoping review, we conducted a systematic search for peer-reviewed studies in PubMed and PsycInfo that empirically examined GenAI involvement in clinical communication. We then mapped study findings onto a well-established framework for patient-centered communication.
Results
Our search yielded 67 studies for analysis. Results suggest that integration of GenAI into healthcare communication has the potential to increase clinician efficiency in interacting with patients, to expand channels for patients to obtain information about their healthcare, and to enhance empathy in clinical communication. However, findings also indicate variability in the quality of information produced by GenAI, the potential for GenAI to recast the clinician as a technical supervisor rather than a humanistic care provider, and several issues of equity and privacy raised by engagement with GenAI.
Conclusion
As GenAI becomes more prevalent in healthcare, rigorous examination of GenAI is needed to ensure that its development and implementation aids rather than hinders patient-centered communication. We conclude with an agenda for further research on GenAI grounded in the PCC framework underlying our review.
Practice Implications
Findings from this review highlight the current potential benefits and limitations of GenAI as a third party to clinical communication. Continued efforts toward developing and applying GenAI for effective healthcare communication should focus on protecting patients from potential drawbacks and maximizing nascent benefits for patient-centered communication.
{"title":"Patient and clinician engagement with generative artificial intelligence (GenAI): A scoping review of implications for patient-centered communication","authors":"Jessica Hahne, Brian D. Carpenter","doi":"10.1016/j.pec.2026.109492","DOIUrl":"10.1016/j.pec.2026.109492","url":null,"abstract":"<div><h3>Objective</h3><div>To examine the influence of the emerging use of generative artificial intelligence (GenAI) within electronic health records and among the public on the patient-centeredness of communication in healthcare.</div></div><div><h3>Method</h3><div>In this scoping review, we conducted a systematic search for peer-reviewed studies in PubMed and PsycInfo that empirically examined GenAI involvement in clinical communication. We then mapped study findings onto a well-established framework for patient-centered communication.</div></div><div><h3>Results</h3><div>Our search yielded 67 studies for analysis. Results suggest that integration of GenAI into healthcare communication has the potential to increase clinician efficiency in interacting with patients, to expand channels for patients to obtain information about their healthcare, and to enhance empathy in clinical communication. However, findings also indicate variability in the quality of information produced by GenAI, the potential for GenAI to recast the clinician as a technical supervisor rather than a humanistic care provider, and several issues of equity and privacy raised by engagement with GenAI.</div></div><div><h3>Conclusion</h3><div>As GenAI becomes more prevalent in healthcare, rigorous examination of GenAI is needed to ensure that its development and implementation aids rather than hinders patient-centered communication. We conclude with an agenda for further research on GenAI grounded in the PCC framework underlying our review.</div></div><div><h3>Practice Implications</h3><div>Findings from this review highlight the current potential benefits and limitations of GenAI as a third party to clinical communication. Continued efforts toward developing and applying GenAI for effective healthcare communication should focus on protecting patients from potential drawbacks and maximizing nascent benefits for patient-centered communication.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109492"},"PeriodicalIF":3.1,"publicationDate":"2026-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023450","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}
Pub Date : 2026-01-16DOI: 10.1016/j.pec.2026.109491
Charmaine L. Blanchard , Patricia McInerney , Maureen Joffe , Moosa Patel , Holly G. Prigerson , Shane Norris
Introduction
Vulnerable cancer patients are at risk of making uninformed treatment decisions. Most patient decision aids (PtDAs) have been developed for high-income country (HIC) populations, with limited testing or adaptation for use in vulnerable populations, either contextually or geographically. This review aimed to understand how PtDAs address the treatment decision-making needs of vulnerable cancer patients.
Methods
We conducted a mixed-methods systematic review of RCTs and other effectiveness studies of PtDAs as well as qualitative studies on the treatment decision-making experiences of vulnerable adults (≥18 years) with cancer. Eight databases were searched. Following PRISMA guidelines, we screened for eligible studies and appraised their methodological quality. Qualitative and quantitative findings were synthesized separately and then integrated to identify gaps and alignments between PtDA design and patient-reported decision support needs.
Results
Twenty-six studies met the inclusion criteria (14 quantitative, 11 qualitative, and one mixed method). Qualitative synthesis showed that vulnerable patients experienced high emotional and psychosocial burdens, preferred in-person support, and often encountered mismatches between their preferred and actual decision-making roles. The narrative synthesis of quantitative studies showed that most PtDAs improved knowledge (5/7 studies) and reduced decisional conflict (6/7), while their effects on shared decision-making were mixed (3/5).
Discussion
PtDAs that provided clear, concise information and were delivered face-to-face better addressed the needs of vulnerable patients than self-administered tools. Although patients reported significant emotional and psychosocial burdens, no PtDAs included structured counselling.
Practice implications
Patient decision aids should be tailored to meet the informational, emotional, and role-support needs of vulnerable cancer patients, particularly in resource-constrained settings.
{"title":"A mixed methods systematic review of cancer treatment decision-making in vulnerable populations","authors":"Charmaine L. Blanchard , Patricia McInerney , Maureen Joffe , Moosa Patel , Holly G. Prigerson , Shane Norris","doi":"10.1016/j.pec.2026.109491","DOIUrl":"10.1016/j.pec.2026.109491","url":null,"abstract":"<div><h3>Introduction</h3><div>Vulnerable cancer patients are at risk of making uninformed treatment decisions. Most patient decision aids (PtDAs) have been developed for high-income country (HIC) populations, with limited testing or adaptation for use in vulnerable populations, either contextually or geographically. This review aimed to understand how PtDAs address the treatment decision-making needs of vulnerable cancer patients.</div></div><div><h3>Methods</h3><div>We conducted a mixed-methods systematic review of RCTs and other effectiveness studies of PtDAs as well as qualitative studies on the treatment decision-making experiences of vulnerable adults (≥18 years) with cancer. Eight databases were searched. Following PRISMA guidelines, we screened for eligible studies and appraised their methodological quality. Qualitative and quantitative findings were synthesized separately and then integrated to identify gaps and alignments between PtDA design and patient-reported decision support needs.</div></div><div><h3>Results</h3><div>Twenty-six studies met the inclusion criteria (14 quantitative, 11 qualitative, and one mixed method). Qualitative synthesis showed that vulnerable patients experienced high emotional and psychosocial burdens, preferred in-person support, and often encountered mismatches between their preferred and actual decision-making roles. The narrative synthesis of quantitative studies showed that most PtDAs improved knowledge (5/7 studies) and reduced decisional conflict (6/7), while their effects on shared decision-making were mixed (3/5).</div></div><div><h3>Discussion</h3><div>PtDAs that provided clear, concise information and were delivered face-to-face better addressed the needs of vulnerable patients than self-administered tools. Although patients reported significant emotional and psychosocial burdens, no PtDAs included structured counselling.</div></div><div><h3>Practice implications</h3><div>Patient decision aids should be tailored to meet the informational, emotional, and role-support needs of vulnerable cancer patients, particularly in resource-constrained settings.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109491"},"PeriodicalIF":3.1,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023490","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}
The prevalence of medical and technical jargon makes the dissemination of healthcare information to patients challenging. Plain language (PL) writing, a style of written communication that strives to employ clear and concise language, is a critical tool for overcoming these hurdles, but is hindered by resource constraints. The emergence of generative Artificial Intelligence (AI) has led to research aimed at assessing its PL writing capacity. The aim of this scoping review was to explore what is known about the use of generative AI platforms for writing in PL.
Methods
A scoping review was conducted via searches across nine databases in Summer 2024. Studies were included if they evaluated a generative AI platform for the use of writing patient education materials (PEMs) in PL and measured best practices (e.g. readability).
Results/Findings
In total, 47 articles were included. Most studies were conducted in the United States (n = 29, 61.7 %). Prompt engineering strategies included specifying a reading grade level, audience, health condition, and resource type. AI-generated PEMs improved readability in 28.3 % of the 46 studies that measured Reading Grade level and in 46.2 % of the 26 studies that measured Reading Ease.
Discussion and conclusion
This review highlights the potential of generative AI for writing PEMs and assisting in the promotion of health literacy in patient care. AI models varied in their ability to generate or edit PEMs into plain language. Further research is needed to determine whether this can be done to industry standards and outside English-language contexts.
{"title":"The utility of artificial intelligence in plain language writing: A scoping review","authors":"Mohamed Ugas , Jimmy Huynh , Ashley Lenarcik-Packham , Anjali Kukan , Angad Deol , Rouhi Fazelzad , Stephanie Fernando , Eleni Giannopoulos , Meredith Elana Giuliani , Karen Lawrie , Naa Kwarley Quartey , Rhys Ralliaram , Anujah Thankarajah , Janet Papadakos","doi":"10.1016/j.pec.2026.109483","DOIUrl":"10.1016/j.pec.2026.109483","url":null,"abstract":"<div><h3>Background/Purpose</h3><div>The prevalence of medical and technical jargon makes the dissemination of healthcare information to patients challenging. Plain language (PL) writing, a style of written communication that strives to employ clear and concise language, is a critical tool for overcoming these hurdles, but is hindered by resource constraints. The emergence of generative Artificial Intelligence (AI) has led to research aimed at assessing its PL writing capacity. The aim of this scoping review was to explore what is known about the use of generative AI platforms for writing in PL.</div></div><div><h3>Methods</h3><div>A scoping review was conducted via searches across nine databases in Summer 2024. Studies were included if they evaluated a generative AI platform for the use of writing patient education materials (PEMs) in PL and measured best practices (e.g. readability).</div></div><div><h3>Results/Findings</h3><div>In total, 47 articles were included. Most studies were conducted in the United States (n = 29, 61.7 %). Prompt engineering strategies included specifying a reading grade level, audience, health condition, and resource type. AI-generated PEMs improved readability in 28.3 % of the 46 studies that measured Reading Grade level and in 46.2 % of the 26 studies that measured Reading Ease.</div></div><div><h3>Discussion and conclusion</h3><div>This review highlights the potential of generative AI for writing PEMs and assisting in the promotion of health literacy in patient care. AI models varied in their ability to generate or edit PEMs into plain language. Further research is needed to determine whether this can be done to industry standards and outside English-language contexts.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109483"},"PeriodicalIF":3.1,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146019958","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}
Pub Date : 2026-01-16DOI: 10.1016/j.pec.2026.109489
Stephanie N. Christian-Afflu , Rania Sheikh , Anna Strang , Anthony M. Chicaiza , Sabrina Oliveros , Etson Barthelus , Isabel Pagan-Lopez , Kathleen A. Lynch , Lisa C. Diamond , Carlos Javier Gonzalez , Kenneth Offit , Mark E. Robson , Ying L. Liu , Jason P. Gonsky , Linda Bulone , Zsofia K. Stadler , Jennifer L. Hay , Jada G. Hamilton
Objectives
Mainstreaming genetic testing models that allow non-genetics healthcare professionals to order testing and then return results to patients with the aid of genetic counselors have shown promising outcomes. However, prior studies have not addressed the informational and communication needs of minority and medically underserved patients, who stand to benefit from greater genetic testing access. In the initial phase of a trial to develop, test, and evaluate a linguistically and culturally appropriate mainstreaming model for hereditary cancer multigene panel testing among cancer patients, we used formative research methods including expert review, revision, and transcreation to adapt educational materials (pre-test brochure and video) and clinical communication materials (post-test clinic visit summary and family letter).
Methods
We conducted cognitive interviews with participants (N = 61) recruited from two US community hospitals to evaluate the cultural and linguistic appropriateness of these adapted materials and identify areas for further refinement. Participants included a diverse sample of English- (59 %), Haitian Creole- (20 %), and Spanish- (21 %) speaking patients with varying educational levels and cancer diagnoses. Interviews, guided by the Learner Verification and Revision framework, provided insight to enhance materials based on attraction, comprehension, cultural acceptability, and self-efficacy.
Results
Although most participants found the materials useful, informative, and relevant, 41.7 % of participants thought the materials required a lot of mental effort, particularly among Haitian Creole-speaking participants. Critical areas for refinement included a more thorough explanation of gene nomenclature, testing procedures, and types of possible test results. Through integrating expert and participant feedback, the readability of all materials improved (e.g., English-language materials improved from grade 11.4 to 7.6).
Conclusions
Cognitive interviews identified important comprehension gaps that were addressable prior to integrating these materials into a larger trial of the mainstreaming genetic testing model.
Practice Implications
Patient-centered material design is critical to improving the reach of genetic services to diverse audiences.
{"title":"Adapting mainstreaming genetic education and clinical communication materials for cancer patients of varying backgrounds","authors":"Stephanie N. Christian-Afflu , Rania Sheikh , Anna Strang , Anthony M. Chicaiza , Sabrina Oliveros , Etson Barthelus , Isabel Pagan-Lopez , Kathleen A. Lynch , Lisa C. Diamond , Carlos Javier Gonzalez , Kenneth Offit , Mark E. Robson , Ying L. Liu , Jason P. Gonsky , Linda Bulone , Zsofia K. Stadler , Jennifer L. Hay , Jada G. Hamilton","doi":"10.1016/j.pec.2026.109489","DOIUrl":"10.1016/j.pec.2026.109489","url":null,"abstract":"<div><h3>Objectives</h3><div>Mainstreaming genetic testing models that allow non-genetics healthcare professionals to order testing and then return results to patients with the aid of genetic counselors have shown promising outcomes. However, prior studies have not addressed the informational and communication needs of minority and medically underserved patients, who stand to benefit from greater genetic testing access. In the initial phase of a trial to develop, test, and evaluate a linguistically and culturally appropriate mainstreaming model for hereditary cancer multigene panel testing among cancer patients, we used formative research methods including expert review, revision, and transcreation to adapt educational materials (pre-test brochure and video) and clinical communication materials (post-test clinic visit summary and family letter).</div></div><div><h3>Methods</h3><div>We conducted cognitive interviews with participants (<em>N</em> = 61) recruited from two US community hospitals to evaluate the cultural and linguistic appropriateness of these adapted materials and identify areas for further refinement. Participants included a diverse sample of English- (59 %), Haitian Creole- (20 %), and Spanish- (21 %) speaking patients with varying educational levels and cancer diagnoses. Interviews, guided by the Learner Verification and Revision framework, provided insight to enhance materials based on attraction, comprehension, cultural acceptability, and self-efficacy.</div></div><div><h3>Results</h3><div>Although most participants found the materials useful, informative, and relevant, 41.7 % of participants thought the materials required a lot of mental effort, particularly among Haitian Creole-speaking participants. Critical areas for refinement included a more thorough explanation of gene nomenclature, testing procedures, and types of possible test results. Through integrating expert and participant feedback, the readability of all materials improved (e.g., English-language materials improved from grade 11.4 to 7.6).</div></div><div><h3>Conclusions</h3><div>Cognitive interviews identified important comprehension gaps that were addressable prior to integrating these materials into a larger trial of the mainstreaming genetic testing model.</div></div><div><h3>Practice Implications</h3><div>Patient-centered material design is critical to improving the reach of genetic services to diverse audiences.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"146 ","pages":"Article 109489"},"PeriodicalIF":3.1,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146127135","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}
Pub Date : 2026-01-16DOI: 10.1016/j.pec.2026.109488
Leonie Emilia Witte , Cornelia van Diepen , Jane Murray Cramm
Objectives
Women diagnosed with BRCA mutations face elevated risks of breast and ovarian cancer. Managing inherited risk involves complex, value-laden decisions, yet health services frequently overlook the distinct challenges these women encounter. Person-centred care (PCC) may complement medical management by addressing what matters most to patients. To inform PCC delivery for women diagnosed with BRCA, this study examined which care aspects women themselves prioritize in their trajectory and how perspectives vary within this population.
Methods
We applied Q-methodology to investigate the perspectives of 23 cancer-unaffected, female BRCA carriers in the Netherlands. Participants ranked statements reflecting PCC principles by personal importance, and elaborated on their choices in interviews. Factor analysis with varimax rotation identified shared viewpoints, which were interpreted using factor arrays and enriched with qualitative data.
Results
Three distinct viewpoints were identified, explaining 51 % of the data variance: (1) ‘The Informed Journey’ in which women prioritized comprehensive information to enable decision-making; (2) ‘Care Rooted in Compassion’ whereby women emphasized the importance of empathic, respectful interactions in building trust; and (3) ‘Acknowledging Intimacy and Loss’ in which women prioritized clinicians’ attention to the embodied impacts of their care trajectory, including reproductive and post-surgical or menopausal challenges.
Conclusions
Our findings support the relevance of person-centred approaches in care for women living with genetic cancer risk. Women with BRCA mutations differ in what they value most in their care, yet shared priorities emerge.
Practice implications
Understanding whether a woman emphasises information, compassion, or bodily concerns can guide clinicians in tailoring communication and counselling. Such alignment helps ensure that risk management strategies are inherently responsive to women’s lived experiences and support their broader well-being.
{"title":"What matters most: A Q-methodology study of the viewpoints of women diagnosed with a BRCA gene mutation on person-centred care","authors":"Leonie Emilia Witte , Cornelia van Diepen , Jane Murray Cramm","doi":"10.1016/j.pec.2026.109488","DOIUrl":"10.1016/j.pec.2026.109488","url":null,"abstract":"<div><h3>Objectives</h3><div>Women diagnosed with BRCA mutations face elevated risks of breast and ovarian cancer. Managing inherited risk involves complex, value-laden decisions, yet health services frequently overlook the distinct challenges these women encounter. Person-centred care (PCC) may complement medical management by addressing what matters most to patients. To inform PCC delivery for women diagnosed with BRCA, this study examined which care aspects women themselves prioritize in their trajectory and how perspectives vary within this population.</div></div><div><h3>Methods</h3><div>We applied Q-methodology to investigate the perspectives of 23 cancer-unaffected, female BRCA carriers in the Netherlands. Participants ranked statements reflecting PCC principles by personal importance, and elaborated on their choices in interviews. Factor analysis with varimax rotation identified shared viewpoints, which were interpreted using factor arrays and enriched with qualitative data.</div></div><div><h3>Results</h3><div>Three distinct viewpoints were identified, explaining 51 % of the data variance: (1) ‘The Informed Journey’ in which women prioritized comprehensive information to enable decision-making; (2) ‘Care Rooted in Compassion’ whereby women emphasized the importance of empathic, respectful interactions in building trust; and (3) ‘Acknowledging Intimacy and Loss’ in which women prioritized clinicians’ attention to the embodied impacts of their care trajectory, including reproductive and post-surgical or menopausal challenges.</div></div><div><h3>Conclusions</h3><div>Our findings support the relevance of person-centred approaches in care for women living with genetic cancer risk. Women with BRCA mutations differ in what they value most in their care, yet shared priorities emerge.</div></div><div><h3>Practice implications</h3><div>Understanding whether a woman emphasises information, compassion, or bodily concerns can guide clinicians in tailoring communication and counselling. Such alignment helps ensure that risk management strategies are inherently responsive to women’s lived experiences and support their broader well-being.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109488"},"PeriodicalIF":3.1,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023558","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}
Pub Date : 2026-01-16DOI: 10.1016/j.pec.2026.109482
Ralph Schilling , Sabine Wiegmann , Mirja Winter , Martina Ernst , Katja Wechsung , Ute Kalender , Barbara Stöckigt , Annette Richter-Unruh , Olaf Hiort , Ulla Döhnert , Louise Marshall , Julia Rohayem , Klaus-Peter Liesenkötter , Martin Wabitsch , Gloria Herrmann , Gundula Ernst , Stephanie Roll , Thomas Keil , Uta Neumann
Objectives
Differences of sex development (DSD) include rare diagnoses such as congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome and other chromosomal, 46,XX- and 46,XY-DSD. Patient education is an essential aspect of an empowerment approach. This analysis evaluated a new training concept with regard to knowledge acquisition for individuals with DSD and their families to make self-determined decisions about treatment options.
Methods
Two-day diagnosis-specific, and age-homogeneous group training sessions were evaluated in a five-centre, single-arm intervention study in a pre-post design conducted in Germany from 07/2020–09/2022. Participants answered six multiple-choice questions before, three and six months after the training concerning biological-genetic principles, physiological and endocrinological effects, as well as recommendations for therapy and treatment. Points were assigned for correct answers and total scores were then evaluated. A sufficient result was defined as achieving at least 75 % of the total score. Furthermore, a change of 10 % compared to baseline was defined as relevant.
Results
A total of 609 subjects were eligible. Participation rates at baseline and 6-month-follow-up were 75 % vs. 39 % (n = 173 children/adolescents), 84 % vs. 46 % (n = 56 young adults), and 89 % vs. 54 % (n = 380 parents).
After six months, the proportion of achieving a sufficient test result had increased by 40 %age points in children/adolescents, and by 20 %age points among young adults and parents. Approximately 60 % of children/adolescents and young adults, as well as 44 % of parents, showed relevant improvements in DSD-specific knowledge.
Conclusions
The first and so far only training concept tailored to the specific needs of people with DSD can enhance individuals’ ability to make self-determined decisions about treatment options.
Practice Implications
In order to improve patient education for individuals with DSD and their families, the presented training concept should be an integral part of the regular medical care as a component of multidisciplinary care in the future.
{"title":"Improving diagnosis-specific knowledge of people with differences of sex development (DSD): Evaluation of the two-day Empower-DSD training course in Germany","authors":"Ralph Schilling , Sabine Wiegmann , Mirja Winter , Martina Ernst , Katja Wechsung , Ute Kalender , Barbara Stöckigt , Annette Richter-Unruh , Olaf Hiort , Ulla Döhnert , Louise Marshall , Julia Rohayem , Klaus-Peter Liesenkötter , Martin Wabitsch , Gloria Herrmann , Gundula Ernst , Stephanie Roll , Thomas Keil , Uta Neumann","doi":"10.1016/j.pec.2026.109482","DOIUrl":"10.1016/j.pec.2026.109482","url":null,"abstract":"<div><h3>Objectives</h3><div>Differences of sex development (DSD) include rare diagnoses such as congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome and other chromosomal, 46,XX- and 46,XY-DSD. Patient education is an essential aspect of an empowerment approach. This analysis evaluated a new training concept with regard to knowledge acquisition for individuals with DSD and their families to make self-determined decisions about treatment options.</div></div><div><h3>Methods</h3><div>Two-day diagnosis-specific, and age-homogeneous group training sessions were evaluated in a five-centre, single-arm intervention study in a pre-post design conducted in Germany from 07/2020–09/2022. Participants answered six multiple-choice questions before, three and six months after the training concerning biological-genetic principles, physiological and endocrinological effects, as well as recommendations for therapy and treatment. Points were assigned for correct answers and total scores were then evaluated. A sufficient result was defined as achieving at least 75 % of the total score. Furthermore, a change of 10 % compared to baseline was defined as relevant.</div></div><div><h3>Results</h3><div>A total of 609 subjects were eligible. Participation rates at baseline and 6-month-follow-up were 75 % vs. 39 % (n = 173 children/adolescents), 84 % vs. 46 % (n = 56 young adults), and 89 % vs. 54 % (n = 380 parents).</div><div>After six months, the proportion of achieving a sufficient test result had increased by 40 %age points in children/adolescents, and by 20 %age points among young adults and parents. Approximately 60 % of children/adolescents and young adults, as well as 44 % of parents, showed relevant improvements in DSD-specific knowledge.</div></div><div><h3>Conclusions</h3><div>The first and so far only training concept tailored to the specific needs of people with DSD can enhance individuals’ ability to make self-determined decisions about treatment options.</div></div><div><h3>Practice Implications</h3><div>In order to improve patient education for individuals with DSD and their families, the presented training concept should be an integral part of the regular medical care as a component of multidisciplinary care in the future.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109482"},"PeriodicalIF":3.1,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023487","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}
Pub Date : 2026-01-16DOI: 10.1016/j.pec.2026.109490
Sarah N. Fuller, Lourah M. Kelly, Lukas A. McNaboe, Xenia G. Bradley, Charlotte J. Winkler, Caroline E. Wolek, Amber L. Wilkes, Patrick C. Bogui, Perpetual E. Taylor, Geetha R. Nichanametla, David P. Patrick, Matthew Babcock
Background
Effective communication between patients and practitioners is essential for patient satisfaction, adherence to the medical plan, and improved health outcomes. Delivering a diagnosis is a necessary component of patient care in the emergency department; however, these conversations can have risk for misunderstandings. This study investigated patient understanding of a new diagnosis in the emergency department and factors that modified this understanding.
Methods
Patients and practitioners completed surveys following delivery of a new diagnosis, and descriptions of the diagnosis by both parties were compared and graded for agreement by three external physicians. We examined whether the severity of diagnosis or adhering to a communication framework class influenced patient-practitioner agreement on the new diagnosis.
Results
Among 196 encounters, 83.7 % described the same diagnosis given by their practitioner (patient-practitioner agreement). Patient-practitioner agreement was correlated with the patient’s full understanding of their diagnosis (r = .17). Patient and practitioner-rated medical severity were inversely related (ρ=-.39). Practitioner-rated illness severity was related to difficulty receiving the diagnosis (ρ=-.38), difficulty delivering the diagnosis (ρ=.18), and adherence to a communication protocol (ρ=-.16). Multivariable Poisson regressions showed significantly increased practitioner-patient agreement on the new diagnosis when the patient self-reported full understanding of the diagnosis (RR=1.18, p < .05), and significantly decreased practitioner-patient agreement within certain diagnostic classes, specifically cardiac (RR=.71, p < .05) and gastrointestinal (RR=.77, p < .05) relative to musculoskeletal diagnoses.
Conclusion
Most patients correctly described a new diagnosis given in the emergency department. However, in cases with misunderstanding, patients were significantly less likely to correctly describe a new diagnosis when they received cardiac and gastrointestinal diagnoses and when they reported anything less than full understanding.
背景:患者和医生之间的有效沟通对于患者满意度、医疗计划的依从性和改善健康结果至关重要。提供诊断是急诊科病人护理的必要组成部分;然而,这些对话也有产生误解的风险。本研究调查了患者对急诊科新诊断的理解以及改变这种理解的因素。方法患者和执业医师在提供新诊断后完成问卷调查,比较双方对诊断的描述,并由三位外部医生进行评分。我们检查了诊断的严重程度或坚持沟通框架类是否影响患者-医生对新诊断的协议。结果在196次就诊中,83.7 %描述了其医生给出的相同诊断(医患一致)。医患协议与患者对诊断的充分理解相关(r = .17)。患者和医生评定的医疗严重程度呈负相关(ρ=- 0.39)。医生评定的疾病严重程度与难以接受诊断(ρ=- 0.38)、难以传达诊断(ρ= 0.18)和遵守沟通协议(ρ=- 0.16)有关。多变量泊松回归显示,当患者自我报告完全理解诊断时,医患对新诊断的一致性显著增加(RR=1.18, p <; )。在某些诊断类别中,特别是心脏诊断类别,医患一致性显著降低(RR= 0.71, p <; )。05)和胃肠道(RR= 0.77, p <; )。05)相对于肌肉骨骼的诊断。结论大多数患者正确描述了急诊科的新诊断。然而,在有误解的情况下,当患者接受心脏和胃肠道诊断时,以及当他们报告任何不完全理解时,患者正确描述新诊断的可能性显著降低。
{"title":"What is said, meant, heard: Practitioner-patient understanding during delivery of diagnoses in the emergency department","authors":"Sarah N. Fuller, Lourah M. Kelly, Lukas A. McNaboe, Xenia G. Bradley, Charlotte J. Winkler, Caroline E. Wolek, Amber L. Wilkes, Patrick C. Bogui, Perpetual E. Taylor, Geetha R. Nichanametla, David P. Patrick, Matthew Babcock","doi":"10.1016/j.pec.2026.109490","DOIUrl":"10.1016/j.pec.2026.109490","url":null,"abstract":"<div><h3>Background</h3><div>Effective communication between patients and practitioners is essential for patient satisfaction, adherence to the medical plan, and improved health outcomes. Delivering a diagnosis is a necessary component of patient care in the emergency department; however, these conversations can have risk for misunderstandings. This study investigated patient understanding of a new diagnosis in the emergency department and factors that modified this understanding.</div></div><div><h3>Methods</h3><div>Patients and practitioners completed surveys following delivery of a new diagnosis, and descriptions of the diagnosis by both parties were compared and graded for agreement by three external physicians. We examined whether the severity of diagnosis or adhering to a communication framework class influenced patient-practitioner agreement on the new diagnosis.</div></div><div><h3>Results</h3><div>Among 196 encounters, 83.7 % described the same diagnosis given by their practitioner (patient-practitioner agreement). Patient-practitioner agreement was correlated with the patient’s full understanding of their diagnosis (<em>r</em> = .17). Patient and practitioner-rated medical severity were inversely related (ρ=-.39). Practitioner-rated illness severity was related to difficulty receiving the diagnosis (ρ=-.38), difficulty delivering the diagnosis (ρ=.18), and adherence to a communication protocol (ρ=-.16). Multivariable Poisson regressions showed significantly increased practitioner-patient agreement on the new diagnosis when the patient self-reported full understanding of the diagnosis (RR=1.18, <em>p</em> < .05), and significantly decreased practitioner-patient agreement within certain diagnostic classes, specifically cardiac (RR=.71, <em>p</em> < .05) and gastrointestinal (RR=.77, <em>p</em> < .05) relative to musculoskeletal diagnoses.</div></div><div><h3>Conclusion</h3><div>Most patients correctly described a new diagnosis given in the emergency department. However, in cases with misunderstanding, patients were significantly less likely to correctly describe a new diagnosis when they received cardiac and gastrointestinal diagnoses and when they reported anything less than full understanding.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109490"},"PeriodicalIF":3.1,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023489","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}
Pub Date : 2026-01-15DOI: 10.1016/j.pec.2026.109484
Dima Saleh , Noha A. Mousa , Haya Ibrahim , Amal Hussein , Ahmed O. Elmeligy , Nagla Elhadi Abdalla , Huda Salih , Ghada Mohammed
Objective
Three-dimensional (3D) printing technology is increasingly utilized across diverse medical fields. In reproductive women’s health, a few 3D models were reported to enhance surgical pre-planning or improve the clinical skills of medical trainees. There is scarce data on its application in patients’ education and counselling in the context of reproductive health. This study aimed to evaluate the effectiveness of 3D-printed models for patient counselling on common female reproductive health concerns and disorders. In addition, we assessed the feasibility of producing these models without the need for industrial manufacturing.
Methods
We employed a prospective quasi-experimental (Pretest-Posttest) design. Various prototypes of 3D-printed models of female reproductive organs, representative of normal anatomy and common reproductive pathologies, were developed. Study participants were patients visiting outpatient women's health clinics for conditions that could be anatomically demonstrated using the 3D models. Patients' understanding was evaluated using a structured questionnaire administered before and after 3D model-assisted counselling, assessing changes in knowledge scores related to diagnostic and management aspects such as female reproductive anatomy, lesion size and location, complications, and procedural interventions.
Results
Developing various 3D-printed models was achieved in-house with minimal training of a team of clinicians, with overall feasible logistics and a low-cost, time-efficient process. Among the 72 women enrolled, 84.7 % reported an increased understanding following the 3D model-assisted counselling by an interviewer, following the conventional counselling by their Gynecologist in the same clinical encounter. The mean knowledge score significantly improved from 14.86 (±6.3) before counselling to 27.8 (±2.5) afterward (p < 0.001). We observed that the participants’ level of education and prior knowledge of their diagnosis significantly influenced the change in knowledge scores. The overall patient satisfaction with the 3D-printed models assisted counselling was positive, with 73.6 % (N = 53) rating it as excellent and 23.6 % (N = 17) as very good.
Conclusion
Integrating 3D-printed models into routine patient counselling is feasible and may significantly enhance patient education and satisfaction in the field of women’s health.
Practice Implications
Clinicians can include 3D-printed models at the office as aids for patient counselling and education.
{"title":"Prospective quasi-experimental study on 3D-printed model-assisted patient counseling in women's reproductive health","authors":"Dima Saleh , Noha A. Mousa , Haya Ibrahim , Amal Hussein , Ahmed O. Elmeligy , Nagla Elhadi Abdalla , Huda Salih , Ghada Mohammed","doi":"10.1016/j.pec.2026.109484","DOIUrl":"10.1016/j.pec.2026.109484","url":null,"abstract":"<div><h3>Objective</h3><div>Three-dimensional (3D) printing technology is increasingly utilized across diverse medical fields. In reproductive women’s health, a few 3D models were reported to enhance surgical pre-planning or improve the clinical skills of medical trainees. There is scarce data on its application in patients’ education and counselling in the context of reproductive health. This study aimed to evaluate the effectiveness of 3D-printed models for patient counselling on common female reproductive health concerns and disorders. In addition, we assessed the feasibility of producing these models without the need for industrial manufacturing.</div></div><div><h3>Methods</h3><div>We employed a prospective quasi-experimental (Pretest-Posttest) design. Various prototypes of 3D-printed models of female reproductive organs, representative of normal anatomy and common reproductive pathologies, were developed. Study participants were patients visiting outpatient women's health clinics for conditions that could be anatomically demonstrated using the 3D models. Patients' understanding was evaluated using a structured questionnaire administered before and after 3D model-assisted counselling, assessing changes in knowledge scores related to diagnostic and management aspects such as female reproductive anatomy, lesion size and location, complications, and procedural interventions.</div></div><div><h3>Results</h3><div>Developing various 3D-printed models was achieved in-house with minimal training of a team of clinicians, with overall feasible logistics and a low-cost, time-efficient process. Among the 72 women enrolled, 84.7 % reported an increased understanding following the 3D model-assisted counselling by an interviewer, <u>following</u> the conventional counselling by their Gynecologist in the same clinical encounter. The mean knowledge score significantly improved from 14.86 (±6.3) before counselling to 27.8 (±2.5) afterward (p < 0.001). We observed that the participants’ level of education and prior knowledge of their diagnosis significantly influenced the change in knowledge scores. The overall patient satisfaction with the 3D-printed models assisted counselling was positive, with 73.6 % (N = 53) rating it as excellent and 23.6 % (N = 17) as very good.</div></div><div><h3>Conclusion</h3><div>Integrating 3D-printed models into routine patient counselling is feasible and may significantly enhance patient education and satisfaction in the field of women’s health.</div></div><div><h3>Practice Implications</h3><div>Clinicians can include 3D-printed models at the office as aids for patient counselling and education.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"145 ","pages":"Article 109484"},"PeriodicalIF":3.1,"publicationDate":"2026-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023559","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}
Pub Date : 2026-01-14DOI: 10.1016/j.pec.2026.109487
Stella Lee , Melissa Robinson-Reilly , Cannas Kwok
Objectives
Ethnic cancer patients (ECPs) in Western countries have been consistently reported as an underserved group in cancer care, with evidence showing lower quality of life compared with native-born populations. This review examined the challenges encountered by ECPs across the cancer trajectory and how these challenges influenced their care experiences.
Methods
A systematic review using a convergent approach was conducted following PRISMA guidelines. Primary studies were identified through comprehensive searches of MEDLINE, Scopus, and CINAHL databases.
Results
Thirteen studies from seven Western countries, involving patients from multiple ethnic groups, were included. Reported challenges clustered into four main areas: ineffective communication, insufficient informational support, cultural barriers and institutional barriers. The findings indicated that these challenges had a significant negative impact on ECPs’ experiences with cancer care throughout the journey.
Conclusions
The challenges identified in the review appear consistent across different cultural groups and healthcare systems, suggesting that this reflects broader structural issues rather than isolated cases. Although the importance of inclusiveness and equity in healthcare, including cancer care, has been well recognised in many Western countries, reducing disparities in immigrant populations in cancer care remains an ongoing priority that demands sustained commitment, continuous evaluation, and targeted strategies.
Practice implications
Further development and wider implementation of culturally responsive strategies are required. These include integrating cultural navigators, expanding interpreter services, and developing culturally specific support programs. Future work should evaluate the effectiveness of culturally adapted interventions and explore innovative approaches to improve communication, access, and patient–provider relationships for ECPs.
{"title":"Challenges in accessing cancer care among ethnic cancer patients: A systematic review","authors":"Stella Lee , Melissa Robinson-Reilly , Cannas Kwok","doi":"10.1016/j.pec.2026.109487","DOIUrl":"10.1016/j.pec.2026.109487","url":null,"abstract":"<div><h3>Objectives</h3><div>Ethnic cancer patients (ECPs) in Western countries have been consistently reported as an underserved group in cancer care, with evidence showing lower quality of life compared with native-born populations. This review examined the challenges encountered by ECPs across the cancer trajectory and how these challenges influenced their care experiences.</div></div><div><h3>Methods</h3><div>A systematic review using a convergent approach was conducted following PRISMA guidelines. Primary studies were identified through comprehensive searches of MEDLINE, Scopus, and CINAHL databases.</div></div><div><h3>Results</h3><div>Thirteen studies from seven Western countries, involving patients from multiple ethnic groups, were included. Reported challenges clustered into four main areas: ineffective communication, insufficient informational support, cultural barriers and institutional barriers. The findings indicated that these challenges had a significant negative impact on ECPs’ experiences with cancer care throughout the journey.</div></div><div><h3>Conclusions</h3><div>The challenges identified in the review appear consistent across different cultural groups and healthcare systems, suggesting that this reflects broader structural issues rather than isolated cases. Although the importance of inclusiveness and equity in healthcare, including cancer care, has been well recognised in many Western countries, reducing disparities in immigrant populations in cancer care remains an ongoing priority that demands sustained commitment, continuous evaluation, and targeted strategies.</div></div><div><h3>Practice implications</h3><div>Further development and wider implementation of culturally responsive strategies are required. These include integrating cultural navigators, expanding interpreter services, and developing culturally specific support programs. Future work should evaluate the effectiveness of culturally adapted interventions and explore innovative approaches to improve communication, access, and patient–provider relationships for ECPs.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"146 ","pages":"Article 109487"},"PeriodicalIF":3.1,"publicationDate":"2026-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146049069","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}