Pub Date : 2025-06-27DOI: 10.1016/j.pecinn.2025.100417
Sandra L. Carroll , Michael McGillion , Julia Abelson , Alexandre Berkesse , Jeff S. Healey
Objective
We describe a Patient Engagement Day from the Canadian Stroke Prevention Network (C-SPIN). Patients and family members were engaged as patient partners to generate and prioritize future direction for Atrial Fibrillation (AF) research.
Methods
A facilitated group discussion methodology was used that included a nominal group brainstorming and decision-making technique designed to foster participation and idea generation.
Results
Twenty-four patient partners attended. Priorities related to: 1) need for a curative focus and not new medication (84 %), 2) identification of triggers (53 %), and 3) home-based/remote monitoring (53 %). Use of the Public and Patient Engagement Evaluation Tool (PPEET) found patient partners understood the intent of the day, with its objectives being met. Findings highlighted knowledge gaps by patient partners that were previously thought to be understood.
Conclusion
Patient partners could benefit from more focused education about atrial fibrillation. Notably, the priorities identified by patient partners were new to the research team, reinforcing the importance of engaging with the population who will be impacted by the research.
Innovation
Little research has been undertaken examining patient partner priorities regarding atrial fibrillation research. This work highlights patient partners' interest in providing input and shaping future research endeavors.
{"title":"Engaging patient partners to identify research priorities for atrial fibrillation: Results from a patient engagement day","authors":"Sandra L. Carroll , Michael McGillion , Julia Abelson , Alexandre Berkesse , Jeff S. Healey","doi":"10.1016/j.pecinn.2025.100417","DOIUrl":"10.1016/j.pecinn.2025.100417","url":null,"abstract":"<div><h3>Objective</h3><div>We describe a Patient Engagement Day from the Canadian Stroke Prevention Network (C-SPIN). Patients and family members were engaged as patient partners to generate and prioritize future direction for Atrial Fibrillation (AF) research.</div></div><div><h3>Methods</h3><div>A facilitated group discussion methodology was used that included a nominal group brainstorming and decision-making technique designed to foster participation and idea generation.</div></div><div><h3>Results</h3><div>Twenty-four patient partners attended. Priorities related to: 1) need for a curative focus and not new medication (84 %), 2) identification of triggers (53 %), and 3) home-based/remote monitoring (53 %). Use of the Public and Patient Engagement Evaluation Tool (PPEET) found patient partners understood the intent of the day, with its objectives being met. Findings highlighted knowledge gaps by patient partners that were previously thought to be understood.</div></div><div><h3>Conclusion</h3><div>Patient partners could benefit from more focused education about atrial fibrillation. Notably, the priorities identified by patient partners were new to the research team, reinforcing the importance of engaging with the population who will be impacted by the research.</div></div><div><h3>Innovation</h3><div>Little research has been undertaken examining patient partner priorities regarding atrial fibrillation research. This work highlights patient partners' interest in providing input and shaping future research endeavors.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100417"},"PeriodicalIF":0.0,"publicationDate":"2025-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144572552","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-27DOI: 10.1016/j.pecinn.2025.100416
Authors: Lana Kluit , Annechien Beumer , Coen A.M. van Bennekom , Angela G.E.M. de Boer , Astrid de Wind
Background
Clinical Work-Integrating Care (CWIC) brings important attention to issues emerging from the interrelationship between health and work. Yet, for various reasons, CWIC is not routinely delivered in clinical healthcare. This study focuses on why medical specialists do or do not provide CWIC, applying a reasoned action approach.
Objective
To examine the associations between attitude, perceived norm, and perceived behavioral control with the provision of CWIC.
Methods
A cross-sectional survey was distributed to Dutch medical specialists. Multivariable regression analysis was used to investigate the associations between attitude, perceived norm, and perceived behavioral control on the ability to provide CWIC with the frequency of actual CWIC provision.
Results
In total, 160 medical specialists completed the survey. The sample consisted of 12 surgical specialists (8 %), 113 non-surgical specialists (71 %), and 35 rehabilitation specialists (22 %). After adjustment for confounders, a favorable attitude was significantly associated with providing CWIC (p < .01), while perceived norm and perceived control were not (p = .74 and p = .85, respectively).
Conclusions
Medical specialists who expressed a favorable attitude towards addressing work during consultations were more likely to provide CWIC. Thus, addressing specialists' attitudes is an important element to implementing CWIC.
{"title":"The association between attitude, perceived norm, and perceived behavioral control with the provision of Clinical Work-Integrating Care: A reasoned action approach","authors":"Authors: Lana Kluit , Annechien Beumer , Coen A.M. van Bennekom , Angela G.E.M. de Boer , Astrid de Wind","doi":"10.1016/j.pecinn.2025.100416","DOIUrl":"10.1016/j.pecinn.2025.100416","url":null,"abstract":"<div><h3>Background</h3><div>Clinical Work-Integrating Care (CWIC) brings important attention to issues emerging from the interrelationship between health and work. Yet, for various reasons, CWIC is not routinely delivered in clinical healthcare. This study focuses on why medical specialists do or do not provide CWIC, applying a reasoned action approach.</div></div><div><h3>Objective</h3><div>To examine the associations between attitude, perceived norm, and perceived behavioral control with the provision of CWIC.</div></div><div><h3>Methods</h3><div>A cross-sectional survey was distributed to Dutch medical specialists. Multivariable regression analysis was used to investigate the associations between attitude, perceived norm, and perceived behavioral control on the ability to provide CWIC with the frequency of actual CWIC provision.</div></div><div><h3>Results</h3><div>In total, 160 medical specialists completed the survey. The sample consisted of 12 surgical specialists (8 %), 113 non-surgical specialists (71 %), and 35 rehabilitation specialists (22 %). After adjustment for confounders, a favorable attitude was significantly associated with providing CWIC (<em>p</em> < .01), while perceived norm and perceived control were not (<em>p</em> = .74 and <em>p</em> = .85, respectively).</div></div><div><h3>Conclusions</h3><div>Medical specialists who expressed a favorable attitude towards addressing work during consultations were more likely to provide CWIC. Thus, addressing specialists' attitudes is an important element to implementing CWIC.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100416"},"PeriodicalIF":0.0,"publicationDate":"2025-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144563783","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-25DOI: 10.1016/j.pecinn.2025.100414
Betsy Sleath , Abena A. Adjei , Jeremy Lowery , Mckenna Knock , Bethany Beznos , Delesha M. Carpenter , Casey R. Tak , Kim James , Michelle Geiser , Nacire Garcia , Charles Lee
Objective
To co-design resources to empower youth to ask questions about vaping and substance use and to disseminate the developed materials in Western North Carolina.
Methods
Two youth advisory boards were formed in Western North Carolina in partnership with two community organizations. Focus groups were conducted with youth, parents, and other stakeholders on what resources to design and how to disseminate them. Dissemination utilized a three-pronged approach which included emailing organizations, in-person events, and social media campaigns. Website analytics were measured utilizing Google Analytics. The intrinsic analytics from X and Instagram were also tracked.
Results
Eleven videos about vaping and substance use were developed along with question prompt lists, a trivia game, and a toolkit for use by educators. There were 1175 impressions on X, and the substance use and vaping content posted on Instagram reached 581 accounts during the dissemination period. The substance use and vaping videos were viewed over 500 times during the dissemination period. Over 10,000 students in Western North Carolina were reached through in-person events.
Conclusion
Videos and other resources on the prevention or cessation of substance use and vaping were created and disseminated using a three-pronged approach. The co-designed materials can be used by youth to empower them to ask health care providers, educators, and other adults questions about vaping and substance use.
Innovation
The vaping and substance use resources were developed for youth by youth. The materials were placed on a website where individuals can anonymously go to learn more about these topics.
{"title":"Co-creating and disseminating substance use and vaping educational videos, question prompt lists, and other resources in partnership with community organizations and youth in Western North Carolina","authors":"Betsy Sleath , Abena A. Adjei , Jeremy Lowery , Mckenna Knock , Bethany Beznos , Delesha M. Carpenter , Casey R. Tak , Kim James , Michelle Geiser , Nacire Garcia , Charles Lee","doi":"10.1016/j.pecinn.2025.100414","DOIUrl":"10.1016/j.pecinn.2025.100414","url":null,"abstract":"<div><h3>Objective</h3><div>To co-design resources to empower youth to ask questions about vaping and substance use and to disseminate the developed materials in Western North Carolina.</div></div><div><h3>Methods</h3><div>Two youth advisory boards were formed in Western North Carolina in partnership with two community organizations. Focus groups were conducted with youth, parents, and other stakeholders on what resources to design and how to disseminate them. Dissemination utilized a three-pronged approach which included emailing organizations, in-person events, and social media campaigns. Website analytics were measured utilizing Google Analytics. The intrinsic analytics from X and Instagram were also tracked.</div></div><div><h3>Results</h3><div>Eleven videos about vaping and substance use were developed along with question prompt lists, a trivia game, and a toolkit for use by educators. There were 1175 impressions on X, and the substance use and vaping content posted on Instagram reached 581 accounts during the dissemination period. The substance use and vaping videos were viewed over 500 times during the dissemination period. Over 10,000 students in Western North Carolina were reached through in-person events.</div></div><div><h3>Conclusion</h3><div>Videos and other resources on the prevention or cessation of substance use and vaping were created and disseminated using a three-pronged approach. The co-designed materials can be used by youth to empower them to ask health care providers, educators, and other adults questions about vaping and substance use.</div></div><div><h3>Innovation</h3><div>The vaping and substance use resources were developed for youth by youth. The materials were placed on a website where individuals can anonymously go to learn more about these topics.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100414"},"PeriodicalIF":0.0,"publicationDate":"2025-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144517179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-24DOI: 10.1016/j.pecinn.2025.100411
Aleksandrina Skvortsova , Stephanie Stiel , Kambiz Afshar , Hanna A.A. Röwer , Claudia Bausewein , Irene Hartigan , Mohamad M. Saab , Sandra Martins Pereira , Pablo Hernández-Marrero , Jan Hrdlička , Jiri Wild , Kateřina Rusinová , Martin Loučka , Lucie Hrdličková , Martin Zielina , Cathy Payne , Liesbeth M. Van Vliet
Objectives
This study investigates i) acceptability, ii) predictors of intention to use, iii) barriers and facilitators, and iv) perceived advantages and disadvantages of incorporating virtual reality (VR) into serious illness communication training from the perspective of health professions educators in Europe.
Methods
An online survey was distributed using snowball sampling across health professions educators involved in the creation and/or delivery of difficult communication courses (as educators, developers, coordinators).
Results
Seventy-five educators from 11 European countries involved in teaching serious illness communication skills completed the survey. While educators viewed VR positively and saw it as useful, their intention to implement it was moderate, possibly, due to low compatibility with current teaching methods and social norms. Major barriers reported by participants included financial constraints (62.7 %) and lack of VR training (54.7 %), while key facilitators were training availability (22 %) and technical support (11 %).
Conclusion/innovation
Educators perceive VR as a potential supplemental tool in difficult communication education; however, overcoming financial, training, and integration barriers is essential for its broader adoption and curricular integration. Further research is necessary to validate VR's effectiveness in developing the nuanced communication skills critical for serious illness communication.
Innovation
VR technology is a promising innovative tool for medical communication training.
{"title":"Acceptability of virtual reality for training health professions students in serious illness communication: A cross-sectional study with educators","authors":"Aleksandrina Skvortsova , Stephanie Stiel , Kambiz Afshar , Hanna A.A. Röwer , Claudia Bausewein , Irene Hartigan , Mohamad M. Saab , Sandra Martins Pereira , Pablo Hernández-Marrero , Jan Hrdlička , Jiri Wild , Kateřina Rusinová , Martin Loučka , Lucie Hrdličková , Martin Zielina , Cathy Payne , Liesbeth M. Van Vliet","doi":"10.1016/j.pecinn.2025.100411","DOIUrl":"10.1016/j.pecinn.2025.100411","url":null,"abstract":"<div><h3>Objectives</h3><div>This study investigates i) acceptability, ii) predictors of intention to use, iii) barriers and facilitators, and iv) perceived advantages and disadvantages of incorporating virtual reality (VR) into serious illness communication training from the perspective of health professions educators in Europe.</div></div><div><h3>Methods</h3><div>An online survey was distributed using snowball sampling across health professions educators involved in the creation and/or delivery of difficult communication courses (as educators, developers, coordinators).</div></div><div><h3>Results</h3><div>Seventy-five educators from 11 European countries involved in teaching serious illness communication skills completed the survey. While educators viewed VR positively and saw it as useful, their intention to implement it was moderate, possibly, due to low compatibility with current teaching methods and social norms. Major barriers reported by participants included financial constraints (62.7 %) and lack of VR training (54.7 %), while key facilitators were training availability (22 %) and technical support (11 %).</div></div><div><h3>Conclusion/innovation</h3><div>Educators perceive VR as a potential supplemental tool in difficult communication education; however, overcoming financial, training, and integration barriers is essential for its broader adoption and curricular integration. Further research is necessary to validate VR's effectiveness in developing the nuanced communication skills critical for serious illness communication.</div></div><div><h3>Innovation</h3><div>VR technology is a promising innovative tool for medical communication training.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100411"},"PeriodicalIF":0.0,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144517814","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-24DOI: 10.1016/j.pecinn.2025.100412
Stephanie K. Kukora , Kerry Ryan , Haoyang Yan , Rachel Clarke , Cynthia Arslanian-Engoren , Kenneth Pituch
Objective
To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.
Patient involvement
To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.
Methods
After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.
Results
Parents who viewed the video provided generally favorable feedback, describing the video as “helpful,” and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.
Discussion/practical value
Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.
{"title":"Development and acceptability testing of a tracheostomy decision support video for parents","authors":"Stephanie K. Kukora , Kerry Ryan , Haoyang Yan , Rachel Clarke , Cynthia Arslanian-Engoren , Kenneth Pituch","doi":"10.1016/j.pecinn.2025.100412","DOIUrl":"10.1016/j.pecinn.2025.100412","url":null,"abstract":"<div><h3>Objective</h3><div>To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.</div></div><div><h3>Patient involvement</h3><div>To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.</div></div><div><h3>Methods</h3><div>After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.</div></div><div><h3>Results</h3><div>Parents who viewed the video provided generally favorable feedback, describing the video as “helpful,” and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.</div></div><div><h3>Discussion/practical value</h3><div>Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100412"},"PeriodicalIF":0.0,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144534829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-24DOI: 10.1016/j.pecinn.2025.100413
Isabel Hamm , Kerstin Dittmer , Frank Vitinius , David Reinert , Marc Hoemberg , Remo Kamm-Thonwart , Rainer Misgeld , Theresia Krieger
Objectives
The study aimed to (1) gain a comprehensive, multi-perspective understanding of the preparation, transmission and follow-up of Breaking Bad News (BBN) in pediatric oncology, and (2) to develop and weigh recommendations for BBN in pediatric oncology.
Methods
A mixed-methods Participatory Group Delphi (PGD) study was conducted to develop recommendations for the preparation, transmission, and follow-up of BBN. Practice-based evidence (PBE) was collected from four groups (N = 14 organizations) with different BBN experiences: (1) patient and family representatives, (2) healthcare providers, (3) psychosocial supporters, and (4) health services researchers.
Results
The PGD process (16 interviews, three focus group discussions and two surveys) resulted in 166 recommendations (preparation: 55; transmission: 45; follow-up: 66).
Conclusion
The PGD approach provided a structured framework for collecting PBE and developing, refining and consolidating recommendations on BBN in pediatric oncology. Involving all affected by BBN was crucial for addressing the complexity of BBN in the recommendations. The mixed-methods design enhanced the reliability and practical applicability of the recommendations.
Innovation
To our knowledge, no prior research in pediatric oncology has systematically integrated existing PBE into a structured set of recommendations in Germany. This study introduces a novel PGD process in this field in Germany, incorporating three key innovations: (1) a participatory methodology ensuring active stakeholder engagement, (2) a uniquely diverse expert panel including those affected by pediatric cancer, and (3) a systematic, iterative recommendation development approach rooted in PBE. This methodology results in a Delphi process that diverges significantly from classical approaches, offering a collaborative and structured framework for evidence synthesis.
目的本研究旨在(1)全面、多角度地了解儿科肿瘤学突发坏消息（Breaking Bad News， BBN）的准备、传播和随访；(2)制定和权衡儿科肿瘤学中BBN的建议。方法采用混合方法参与组德尔菲（PGD）研究，对BBN的制备、传播和随访提出建议。基于实践的证据（PBE）来自四组（N = 14个组织），他们具有不同的BBN经验：(1)患者和家属代表，(2)医疗保健提供者，(3)社会心理支持者，(4)卫生服务研究人员。PGD过程（16次访谈，3次焦点小组讨论和2次调查）产生166条建议(准备：55；传输:45;追问:66)。结论PGD方法为收集PBE和制定、完善和巩固儿科肿瘤学BBN建议提供了一个结构化框架。让所有受BBN影响的人参与进来，对于在建议中处理BBN的复杂性至关重要。混合方法的设计提高了建议的可靠性和实用性。据我们所知，在德国还没有儿科肿瘤学的研究将现有的PBE系统地整合到一套结构化的建议中。本研究在德国该领域引入了一种新颖的PGD流程，包括三个关键创新：(1)确保利益相关者积极参与的参与式方法，(2)包括儿童癌症患者在内的独特多样化专家小组，以及(3)基于PBE的系统，迭代的建议开发方法。这种方法产生的德尔菲过程与经典方法有很大的不同，为证据合成提供了一个协作和结构化的框架。
{"title":"Developing multi-perspective practice-based evidence theses for breaking bad news in the German pediatric oncology: A participatory group Delphi study","authors":"Isabel Hamm , Kerstin Dittmer , Frank Vitinius , David Reinert , Marc Hoemberg , Remo Kamm-Thonwart , Rainer Misgeld , Theresia Krieger","doi":"10.1016/j.pecinn.2025.100413","DOIUrl":"10.1016/j.pecinn.2025.100413","url":null,"abstract":"<div><h3>Objectives</h3><div>The study aimed to (1) gain a comprehensive, multi-perspective understanding of the preparation, transmission and follow-up of Breaking Bad News (BBN) in pediatric oncology, and (2) to develop and weigh recommendations for BBN in pediatric oncology.</div></div><div><h3>Methods</h3><div>A mixed-methods Participatory Group Delphi (PGD) study was conducted to develop recommendations for the preparation, transmission, and follow-up of BBN. Practice-based evidence (PBE) was collected from four groups (<em>N</em> = 14 organizations) with different BBN experiences: (1) patient and family representatives, (2) healthcare providers, (3) psychosocial supporters, and (4) health services researchers.</div></div><div><h3>Results</h3><div>The PGD process (16 interviews, three focus group discussions and two surveys) resulted in 166 recommendations (preparation: 55; transmission: 45; follow-up: 66).</div></div><div><h3>Conclusion</h3><div>The PGD approach provided a structured framework for collecting PBE and developing, refining and consolidating recommendations on BBN in pediatric oncology. Involving all affected by BBN was crucial for addressing the complexity of BBN in the recommendations. The mixed-methods design enhanced the reliability and practical applicability of the recommendations.</div></div><div><h3>Innovation</h3><div>To our knowledge, no prior research in pediatric oncology has systematically integrated existing PBE into a structured set of recommendations in Germany. This study introduces a novel PGD process in this field in Germany, incorporating three key innovations: (1) a participatory methodology ensuring active stakeholder engagement, (2) a uniquely diverse expert panel including those affected by pediatric cancer, and (3) a systematic, iterative recommendation development approach rooted in PBE. This methodology results in a Delphi process that diverges significantly from classical approaches, offering a collaborative and structured framework for evidence synthesis.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100413"},"PeriodicalIF":0.0,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144522411","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-07DOI: 10.1016/j.pecinn.2025.100409
Caroline Salafia , Smita Banerjee , Jada G. Hamilton , Elizabeth Schofield , Yuelin Li , David B. Buller , Keith Hunley , Andrew L. Sussman , Dolores D. Guest , Kimberly A. Kaphingst , Marianne Berwick , Jennifer L. Hay
Objective
Given the promise of family communication to prompt cancer risk awareness, we examined how an offer for skin cancer genetic testing may prompt family cancer communication.
Methods
Primary care patients (N = 415, 45 % Hispanic) in New Mexico were randomized to a melanocortin-1 receptor (MC1R) genetic test invitation or usual care. We assessed whether family communication (frequency, targets of communication, and topics) differed based on whether participants were randomized to usual care, refused genetic testing, were tested and received either average- or higher-risk feedback.
Results
Findings showed no significant differences in frequency of family communication based on intervention exposure. Those who were tested and received higher-risk feedback displayed the highest levels of communication with certain targets, such as fathers. Some communication topics, such as the participant's risk of skin cancer, were discussed more by participants who were tested (both average- and higher-risk feedback) than those in usual care.
Conclusion
Findings highlight that an offer for skin cancer genetic testing may prompt aspects of family communication, such as discussion surrounding personal skin cancer risk.
Innovation
This study examined various elements of family communication after an offer for skin cancer genetic testing.
{"title":"Prospective changes in primary care patients' family communication after skin cancer genetic test offer","authors":"Caroline Salafia , Smita Banerjee , Jada G. Hamilton , Elizabeth Schofield , Yuelin Li , David B. Buller , Keith Hunley , Andrew L. Sussman , Dolores D. Guest , Kimberly A. Kaphingst , Marianne Berwick , Jennifer L. Hay","doi":"10.1016/j.pecinn.2025.100409","DOIUrl":"10.1016/j.pecinn.2025.100409","url":null,"abstract":"<div><h3>Objective</h3><div>Given the promise of family communication to prompt cancer risk awareness, we examined how an offer for skin cancer genetic testing may prompt family cancer communication.</div></div><div><h3>Methods</h3><div>Primary care patients (<em>N</em> = 415, 45 % Hispanic) in New Mexico were randomized to a melanocortin-1 receptor (<em>MC1R)</em> genetic test invitation or usual care. We assessed whether family communication (frequency, targets of communication, and topics) differed based on whether participants were randomized to usual care, refused genetic testing, were tested and received either average- or higher-risk feedback.</div></div><div><h3>Results</h3><div>Findings showed no significant differences in frequency of family communication based on intervention exposure. Those who were tested and received higher-risk feedback displayed the highest levels of communication with certain targets, such as fathers. Some communication topics, such as the participant's risk of skin cancer, were discussed more by participants who were tested (both average- and higher-risk feedback) than those in usual care.</div></div><div><h3>Conclusion</h3><div>Findings highlight that an offer for skin cancer genetic testing may prompt aspects of family communication, such as discussion surrounding personal skin cancer risk.</div></div><div><h3>Innovation</h3><div>This study examined various elements of family communication after an offer for skin cancer genetic testing.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100409"},"PeriodicalIF":0.0,"publicationDate":"2025-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144270751","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-06DOI: 10.1016/j.pecinn.2025.100408
Michael Soh , Dolores Mullikin , Steven J. Durning , Jerusalem Merkebu
Objective
This study explores how, if at all, engaged curiosity - a genuine, emotionally engaged interest in learning more about the complexity of another's particular emotional perspective - emerges in the clinical reasoning process and its relationship with contextual factors and clinical reasoning performance.
Methods
Think-alouds transcripts from nineteen physicians in internal medicine from three military training facilities were thematically analyzed for instances of engaged curiosity and examined through the lens of contextual factors and clinical reasoning performance.
Results
Our findings indicate that engaged curiosity can be likened to placeholders that physicians employ early on to “bookmark” sources of patient concern. These sources, or hot spots, deserve follow up, particularly when cognitive resources are unavailable to “attend” to a deeper understanding of the patient's experience.
Conclusion
Engaged curiosity provides a unique lens for better understanding the relationship between empathy and clinical reasoning and warrants further research on its impact on the patient and their care.
Innovation
Engaged curiosity could serve as a novel way to train physicians to think and engage more empathically with their patients.
{"title":"Engaged curiosity: “Hot spots” for clinical reasoning in complex patient encounters","authors":"Michael Soh , Dolores Mullikin , Steven J. Durning , Jerusalem Merkebu","doi":"10.1016/j.pecinn.2025.100408","DOIUrl":"10.1016/j.pecinn.2025.100408","url":null,"abstract":"<div><h3>Objective</h3><div>This study explores how, if at all, engaged curiosity - a genuine, emotionally engaged interest in learning more about the complexity of another's particular emotional perspective - emerges in the clinical reasoning process and its relationship with contextual factors and clinical reasoning performance.</div></div><div><h3>Methods</h3><div>Think-alouds transcripts from nineteen physicians in internal medicine from three military training facilities were thematically analyzed for instances of engaged curiosity and examined through the lens of contextual factors and clinical reasoning performance.</div></div><div><h3>Results</h3><div>Our findings indicate that engaged curiosity can be likened to placeholders that physicians employ early on to “bookmark” sources of patient concern. These sources, or hot spots, deserve follow up, particularly when cognitive resources are unavailable to “attend” to a deeper understanding of the patient's experience.</div></div><div><h3>Conclusion</h3><div>Engaged curiosity provides a unique lens for better understanding the relationship between empathy and clinical reasoning and warrants further research on its impact on the patient and their care.</div></div><div><h3>Innovation</h3><div>Engaged curiosity could serve as a novel way to train physicians to think and engage more empathically with their patients.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100408"},"PeriodicalIF":0.0,"publicationDate":"2025-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144254654","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-01DOI: 10.1016/j.pecinn.2025.100407
Rachel C. Forcino , Terry Sturke , Mary P. McGowan , Amanda N. Perry , Shoshana H. Bardach , Vikrant S. Vaze , Kerrilynn C. Hennessey
Background
Familial hypercholesterolemia (FH) is a genetic condition which elevates cholesterol levels and increases risk of premature cardiac events. Medical treatment greatly reduces those risks. However, in the United States, FH is markedly underdiagnosed. We aimed to design and evaluate direct outreach and referral to specialty care for patients with an elevated risk of FH identified through application of a machine learning model and expert review of the electronic health record in a rural United States health system.
Methods
Two sets of interviews: (1) seeking advice for designing outreach from a convenience sample comprising health professionals and members of the public both with and without FH and (2)) evaluating the outreach with a convenience sample of health professionals and patients who received the outreach. Two researchers conducted each interview. Thematic analysis included investigator triangulation.
Results
We conducted 15 pre-outreach interviews and 32 post-outreach interviews. Most members of the public felt the outreach should be initiated by the patient's primary care clinician, while health professionals recommended outreach directly from a lipid specialist after notifying the primary care clinician. Outreach ultimately included primary care clinician notification; a mailed letter from lipid specialists to the patient indicating partnership with primary care; a message sent through the online patient portal; and a telephone call(s) from a lipid specialist to the patient. Phone calls were most impactful in prompting a clinical evaluation for FH. We identified 4 themes: (1) Both patients and clinical team members supported direct-to-patient outreach about FH; (2) Phone calls from lipid specialists to patients were considered high-value; (3) The importance of primary care team member involvement was perceived differently between pre- and post-outreach phases; and (4)) Outreach had a broader impact beyond the individual patients reached, including family screening.
Innovation
This study provides key insights into the acceptable design and use of machine learning and electronic health record data for direct-to-patient outreach.
Conclusions
Partnership with the target population led to direct-to-patient FH outreach that was acceptable to most recipients. High-touch engagement by lipid specialists included repeat phone calls, which maximized patients' response but are unlikely to be sustained in routine practice.
{"title":"A novel outreach approach for identification of familial hypercholesterolemia: Interview-based formative evaluation to improve healthcare access and quality","authors":"Rachel C. Forcino , Terry Sturke , Mary P. McGowan , Amanda N. Perry , Shoshana H. Bardach , Vikrant S. Vaze , Kerrilynn C. Hennessey","doi":"10.1016/j.pecinn.2025.100407","DOIUrl":"10.1016/j.pecinn.2025.100407","url":null,"abstract":"<div><h3>Background</h3><div>Familial hypercholesterolemia (FH) is a genetic condition which elevates cholesterol levels and increases risk of premature cardiac events. Medical treatment greatly reduces those risks. However, in the United States, FH is markedly underdiagnosed. We aimed to design and evaluate direct outreach and referral to specialty care for patients with an elevated risk of FH identified through application of a machine learning model and expert review of the electronic health record in a rural United States health system.</div></div><div><h3>Methods</h3><div>Two sets of interviews: (1) seeking advice for designing outreach from a convenience sample comprising health professionals and members of the public both with and without FH and (2)) evaluating the outreach with a convenience sample of health professionals and patients who received the outreach. Two researchers conducted each interview. Thematic analysis included investigator triangulation.</div></div><div><h3>Results</h3><div>We conducted 15 pre-outreach interviews and 32 post-outreach interviews. Most members of the public felt the outreach should be initiated by the patient's primary care clinician, while health professionals recommended outreach directly from a lipid specialist after notifying the primary care clinician. Outreach ultimately included primary care clinician notification; a mailed letter from lipid specialists to the patient indicating partnership with primary care; a message sent through the online patient portal; and a telephone call(s) from a lipid specialist to the patient. Phone calls were most impactful in prompting a clinical evaluation for FH. We identified 4 themes: (1) Both patients and clinical team members supported direct-to-patient outreach about FH; (2) Phone calls from lipid specialists to patients were considered high-value; (3) The importance of primary care team member involvement was perceived differently between pre- and post-outreach phases; and (4)) Outreach had a broader impact beyond the individual patients reached, including family screening.</div></div><div><h3>Innovation</h3><div>This study provides key insights into the acceptable design and use of machine learning and electronic health record data for direct-to-patient outreach.</div></div><div><h3>Conclusions</h3><div>Partnership with the target population led to direct-to-patient FH outreach that was acceptable to most recipients. High-touch engagement by lipid specialists included repeat phone calls, which maximized patients' response but are unlikely to be sustained in routine practice.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"6 ","pages":"Article 100407"},"PeriodicalIF":0.0,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144204892","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-05-25DOI: 10.1016/j.pecinn.2025.100405
Bob C. Mulder , Hylkje Algra , Esther Cruijsen , J. Marianne Geleijnse , Renate M. Winkels , Willemieke Kroeze
Objective
This article reports the findings of focus-group discussions with healthcare providers concerning the facilitators and barriers they experience when engaging in therapeutic patient education (TPE).
Methods
Five focus-group discussions were held with a total of 21 primary and secondary healthcare providers. Discussions were moderated using a topic list that was co-created with healthcare providers. All discussions were recorded, transcribed verbatim and analysed thematically.
Results
Healthcare providers consider TPE important, but it requires long-term, continuous effort in order to be effective. They sometimes doubt its effectiveness and their own efficacy. Moreover, healthcare providers experience a lack of a supportive environment. Overall, their experiences could be captured in four categories of determinants of engaging in TPE: Capabilities, Motivation, Physical Context and Social Context.
Conclusion
Therapeutic patient education requires healthcare providers to be capable and motivated. To maintain the continuous effort needed, healthcare providers need to be supported both socially (e.g. by colleagues and management) and physically (e.g. through communication infrastructure).
Innovation
In contrast to previous studies focusing on the motivation and capability of healthcare providers to perform TPE, this study contributes to innovation in health communication by identifying social and physical factors that determine whether TPE is delivered continuously under actual or perceived constraints in terms of time and effectiveness.
{"title":"Beyond motivation: Creating supportive healthcare environments for engaging in therapeutic patient education according to healthcare providers","authors":"Bob C. Mulder , Hylkje Algra , Esther Cruijsen , J. Marianne Geleijnse , Renate M. Winkels , Willemieke Kroeze","doi":"10.1016/j.pecinn.2025.100405","DOIUrl":"10.1016/j.pecinn.2025.100405","url":null,"abstract":"<div><h3>Objective</h3><div>This article reports the findings of focus-group discussions with healthcare providers concerning the facilitators and barriers they experience when engaging in therapeutic patient education (TPE).</div></div><div><h3>Methods</h3><div>Five focus-group discussions were held with a total of 21 primary and secondary healthcare providers. Discussions were moderated using a topic list that was co-created with healthcare providers. All discussions were recorded, transcribed verbatim and analysed thematically.</div></div><div><h3>Results</h3><div>Healthcare providers consider TPE important, but it requires long-term, continuous effort in order to be effective. They sometimes doubt its effectiveness and their own efficacy. Moreover, healthcare providers experience a lack of a supportive environment. Overall, their experiences could be captured in four categories of determinants of engaging in TPE: Capabilities, Motivation, Physical Context and Social Context.</div></div><div><h3>Conclusion</h3><div>Therapeutic patient education requires healthcare providers to be capable and motivated. To maintain the continuous effort needed, healthcare providers need to be supported both socially (e.g. by colleagues and management) and physically (e.g. through communication infrastructure).</div></div><div><h3>Innovation</h3><div>In contrast to previous studies focusing on the motivation and capability of healthcare providers to perform TPE, this study contributes to innovation in health communication by identifying social and physical factors that determine whether TPE is delivered continuously under actual or perceived constraints in terms of time and effectiveness.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"6 ","pages":"Article 100405"},"PeriodicalIF":0.0,"publicationDate":"2025-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144169444","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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