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Web-based educational tools and decision aids for patients with advanced cancer: A systematic review
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-14 DOI: 10.1016/j.pec.2025.108706
Phoebe Ullrich , Henrike Voß , Laura Unsöld , Michael Thomas , Matthias Villalobos

Objectives

To provide an overview of existing interactive web-based educational tools and decision aids for patients with advanced cancer and to evaluate their development process, content, feasibility, usability, and effectiveness.

Methods

Systematic literature search from inception to November 2023; screening with Covidence software; narrative analysis of results and quality assessment with the SUNDAE checklist.

Results

Sixteen web-based tools were identified: Seven for breast cancer, six for other specific cancers, and three for mixed populations. Studies predominantly used literature reviews, focus groups, and/or pre-existing tools for the development. The tools were heterogeneous and not all integrated aspects of end-of-life care. User tests included controlled trials, prospective interventional cohort studies, and a retrospective observational study, involving a total of 6192 patients. Results showed partially low adoption and infrequent use. Feasibility and usability were positively rated with high rates of user satisfaction. Preparation for and involvement in decision-making was partially supported by increased knowledge and improved doctor-patient relationships. Effects on involvement and self-efficacy in decision-making, participation, and distress were uncertain. Effects on quality of life, hope, anxiety, engagement in palliative care/advance directives, and survival were not found.

Conclusions

Despite high user satisfaction and adequate feasibility and usability, the evidence for other outcomes is diverse and low for long-term implementation. Tools are very heterogeneous in cancer entities and content. Although targeting patients with advanced cancer not all tools integrate aspects of palliative care and end-of-life.

Practice implications

In advanced cancer care, patient involvement in decision-making is complex. Web-based solutions are promising because of easy accessibility and dissemination and the ability to adapt information to patients’ needs and new treatment developments. Still, only a few evidence-based web-based educational tools and decision aids are available. Filling this gap is essential to empower patients to make informed and goal-concordant treatment decisions.
{"title":"Web-based educational tools and decision aids for patients with advanced cancer: A systematic review","authors":"Phoebe Ullrich ,&nbsp;Henrike Voß ,&nbsp;Laura Unsöld ,&nbsp;Michael Thomas ,&nbsp;Matthias Villalobos","doi":"10.1016/j.pec.2025.108706","DOIUrl":"10.1016/j.pec.2025.108706","url":null,"abstract":"<div><h3>Objectives</h3><div>To provide an overview of existing interactive web-based educational tools and decision aids for patients with advanced cancer and to evaluate their development process, content, feasibility, usability, and effectiveness.</div></div><div><h3>Methods</h3><div>Systematic literature search from inception to November 2023; screening with Covidence software; narrative analysis of results and quality assessment with the SUNDAE checklist.</div></div><div><h3>Results</h3><div>Sixteen web-based tools were identified: Seven for breast cancer, six for other specific cancers, and three for mixed populations. Studies predominantly used literature reviews, focus groups, and/or pre-existing tools for the development. The tools were heterogeneous and not all integrated aspects of end-of-life care. User tests included controlled trials, prospective interventional cohort studies, and a retrospective observational study, involving a total of 6192 patients. Results showed partially low adoption and infrequent use. Feasibility and usability were positively rated with high rates of user satisfaction. Preparation for and involvement in decision-making was partially supported by increased knowledge and improved doctor-patient relationships. Effects on involvement and self-efficacy in decision-making, participation, and distress were uncertain. Effects on quality of life, hope, anxiety, engagement in palliative care/advance directives, and survival were not found.</div></div><div><h3>Conclusions</h3><div>Despite high user satisfaction and adequate feasibility and usability, the evidence for other outcomes is diverse and low for long-term implementation. Tools are very heterogeneous in cancer entities and content. Although targeting patients with advanced cancer not all tools integrate aspects of palliative care and end-of-life.</div></div><div><h3>Practice implications</h3><div>In advanced cancer care, patient involvement in decision-making is complex. Web-based solutions are promising because of easy accessibility and dissemination and the ability to adapt information to patients’ needs and new treatment developments. Still, only a few evidence-based web-based educational tools and decision aids are available. Filling this gap is essential to empower patients to make informed and goal-concordant treatment decisions.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108706"},"PeriodicalIF":2.9,"publicationDate":"2025-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143436896","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Dismissive medicine and gaslighting of patients by physicians – A bioethics lens
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-13 DOI: 10.1016/j.pec.2025.108701
Gillie Gabay

Objectives

This Discussion paper seeks to raise awareness of the phenomena of dismissive medicine (DM) and medical gaslighting (MG) and their underlying threats to principles of Bioethics. DM refers to mistreatment and negative patient-physician interactions. In most studies on DM, patients perceived physicians as invalidating their illness, as uniformed, as blaming and stigmatizing them, misunderstanding their condition, insensitive, rushing the visit, refusing to discuss pain, rude, and failing to maintain eye contact, listen, and to provide appropriate information about causes and treatments. A special case of DM is MG, referring to the experience of patients when their medical complaints and suffering are discounted, doubted, questioned, second guessed, or denied by physicians causing patients self-doubts. DM and MG may occur, at times, unintentionally Durbhakula and Fortin [1] and Fielding-Singh and Dmowska [2], resulting in severe ramifications. Surprisingly, existing reports focused on the clinical, economic, psychological, and emotional ramifications of DM and MG (Braeuninger-Weimer et al., 2019; Burke, 2019; Street et al., 2019; Merone et al., 2022; Claréus and Renström, 2019; Sheehan, 2020; Turan et al., 2019; Penner and Paul, 2017; Au et al., 2022; Dolezal, 2022; Shapiro and Hayburn, 2024; Fuss et al., 2024; Hunt, 2022) [3], [4], [5], [6], [7], [8], [9], [10], [11], [12], [13], [14], [15], rather than on the infringement of bioethics, which is the focus of this Discussion paper.

Conclusions

DM and MG not only cause patients to feel stigma, prejudice, shame, and blame, and develop fear of seeking clinical help but also, constitute infringements of beneficence, non-malfeasance, respect for patient right of autonomy, and distributive justice in patient care. This Discussion paper calls for more education about the implicit ethical aspects of these phenomena and policy modifications to efface DM and MG.
{"title":"Dismissive medicine and gaslighting of patients by physicians – A bioethics lens","authors":"Gillie Gabay","doi":"10.1016/j.pec.2025.108701","DOIUrl":"10.1016/j.pec.2025.108701","url":null,"abstract":"<div><h3>Objectives</h3><div>This Discussion paper seeks to raise awareness of the phenomena of dismissive medicine (DM) and medical gaslighting (MG) and their underlying threats to principles of Bioethics. DM refers to mistreatment and negative patient-physician interactions. In most studies on DM, patients perceived physicians as invalidating their illness, as uniformed, as blaming and stigmatizing them, misunderstanding their condition, insensitive, rushing the visit, refusing to discuss pain, rude, and failing to maintain eye contact, listen, and to provide appropriate information about causes and treatments. A special case of DM is MG, referring to the experience of patients when their medical complaints and suffering are discounted, doubted, questioned, second guessed, or denied by physicians causing patients self-doubts. DM and MG may occur, at times, unintentionally Durbhakula and Fortin <span><span>[1]</span></span> and Fielding-Singh and Dmowska <span><span>[2]</span></span>, resulting in severe ramifications. Surprisingly, existing reports focused on the clinical, economic, psychological, and emotional ramifications of DM and MG (Braeuninger-Weimer et al., 2019; Burke, 2019; Street et al., 2019; Merone et al., 2022; Claréus and Renström, 2019; Sheehan, 2020; Turan et al., 2019; Penner and Paul, 2017; Au et al., 2022; Dolezal, 2022; Shapiro and Hayburn, 2024; Fuss et al., 2024; Hunt, 2022) <span><span>[3]</span></span>, <span><span>[4]</span></span>, <span><span>[5]</span></span>, <span><span>[6]</span></span>, <span><span>[7]</span></span>, <span><span>[8]</span></span>, <span><span>[9]</span></span>, <span><span>[10]</span></span>, <span><span>[11]</span></span>, <span><span>[12]</span></span>, <span><span>[13]</span></span>, <span><span>[14]</span></span>, <span><span>[15]</span></span>, rather than on the infringement of bioethics, which is the focus of this Discussion paper.</div></div><div><h3>Conclusions</h3><div>DM and MG not only cause patients to feel stigma, prejudice, shame, and blame, and develop fear of seeking clinical help but also, constitute infringements of beneficence, non-malfeasance, respect for patient right of autonomy, and distributive justice in patient care. This Discussion paper calls for more education about the implicit ethical aspects of these phenomena and policy modifications to efface DM and MG.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108701"},"PeriodicalIF":2.9,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143420149","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}
引用次数: 0
Parental satisfaction with diagnosis disclosure: A study on parents of children or adults with genetic syndromes
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-12 DOI: 10.1016/j.pec.2025.108704
Laura Zampini , Giacomo Garavaglia , Diletta Costa , Paola Zanchi

Objectives

The study aimed to examine parental satisfaction with the communication of the diagnosis in parents of children or adults diagnosed with a genetic syndrome. Several factors were considered, such as the time of ascertainment (prenatal, at birth or in childhood) and knowledge of the syndrome. Potential predictors of parental satisfaction were analysed by considering cognitive, affective and environmental factors.

Methods

Participants in the study were 390 parents of individuals (aged between two months and 45 years) diagnosed with a genetic syndrome. Parents completed a specially developed online questionnaire to assess the perceived severity of their child's condition, their experience with the diagnosis communication process, and their satisfaction with that process.

Results

Parents who received the communication at birth appeared less satisfied with the communication process. No significant differences emerged in the satisfaction of parents who received communication about a known genetic syndrome (i.e. if the parents knew broadly or exhaustively what it was) and those who received communication about an unknown syndrome (i.e. if the parents had never heard of it or only knew about the existence of the genetic condition). Cognitive factors (e.g. the amount of information provided), affective factors (e.g. empathy), and environmental factors (e.g. delivery of written documents) contribute to explaining individual variability in parental satisfaction.

Conclusions

Many factors contribute to explaining parents’ satisfaction with the disclosure of the diagnosis of a genetic syndrome in their children. The contribution of individual parental factors, such as personality traits or well-being, remains to be investigated.

Practice Implications

Great care needs to be taken when communicating the diagnosis of genetic syndromes, especially if it is made in the perinatal period. Some practical measures, such as the provision of written information, can improve the experience for parents.
{"title":"Parental satisfaction with diagnosis disclosure: A study on parents of children or adults with genetic syndromes","authors":"Laura Zampini ,&nbsp;Giacomo Garavaglia ,&nbsp;Diletta Costa ,&nbsp;Paola Zanchi","doi":"10.1016/j.pec.2025.108704","DOIUrl":"10.1016/j.pec.2025.108704","url":null,"abstract":"<div><h3>Objectives</h3><div>The study aimed to examine parental satisfaction with the communication of the diagnosis in parents of children or adults diagnosed with a genetic syndrome. Several factors were considered, such as the time of ascertainment (prenatal, at birth or in childhood) and knowledge of the syndrome. Potential predictors of parental satisfaction were analysed by considering cognitive, affective and environmental factors.</div></div><div><h3>Methods</h3><div>Participants in the study were 390 parents of individuals (aged between two months and 45 years) diagnosed with a genetic syndrome. Parents completed a specially developed online questionnaire to assess the perceived severity of their child's condition, their experience with the diagnosis communication process, and their satisfaction with that process.</div></div><div><h3>Results</h3><div>Parents who received the communication at birth appeared less satisfied with the communication process. No significant differences emerged in the satisfaction of parents who received communication about a known genetic syndrome (i.e. if the parents knew broadly or exhaustively what it was) and those who received communication about an unknown syndrome (i.e. if the parents had never heard of it or only knew about the existence of the genetic condition). Cognitive factors (e.g. the amount of information provided), affective factors (e.g. empathy), and environmental factors (e.g. delivery of written documents) contribute to explaining individual variability in parental satisfaction.</div></div><div><h3>Conclusions</h3><div>Many factors contribute to explaining parents’ satisfaction with the disclosure of the diagnosis of a genetic syndrome in their children. The contribution of individual parental factors, such as personality traits or well-being, remains to be investigated.</div></div><div><h3>Practice Implications</h3><div>Great care needs to be taken when communicating the diagnosis of genetic syndromes, especially if it is made in the perinatal period. Some practical measures, such as the provision of written information, can improve the experience for parents.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108704"},"PeriodicalIF":2.9,"publicationDate":"2025-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143420209","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Impact of patient engagement types on doctors’ service provision in online health communities
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-07 DOI: 10.1016/j.pec.2025.108700
Wei Zhang , Jingwen Xuan , Mingxuan Cai , Magdalena Kludacz-Alessandri , Richard Evans

Objectives

Online Health Communities (OHCs) contributes to patient access to health information and doctor-patient communication. However, how patient engagement types influence doctor service provision in OHCs remains unclear.

Methods

With the PACE system, this study employs content analysis and clustering methods to examine the relationship between patient engagement types and doctor service provision. A qualitative study utilizing discourse analysis of online doctor-patient communication was conducted. A total of 300 consultation records from the Chinese OHC, Ding Xiang Doctor (DXY), were collected between August 1 and October 31, 2023.

Results

The study identifies four patient engagement types, including emotional disclosure, decision-making engagement, consumption-oriented, and doctor-driven types. Discourse analysis reveals that doctors adjust their communication strategies according to patient engagement types, prioritizing service provision and communication tasks differently. Specifically, doctors turn to 1) respond with more empathy to emotional disclosure patients, providing more comforting words; 2) discuss more with decision-making engagement patients on treatment plan and provide more medical explanations; 3) focus more on information provision by answering patient inquiries with less interaction with consumption-oriented patients; and 4) demonstrate more authority with higher frequency of use of closed questions, outlining possible conditions and providing concise diagnostic advice with doctor-driven patients.

Conclusions

This study explores the impact of patient engagement in OHCs on doctor service provision. It reveals that doctors adapt their communication approaches based on the patient engagement types.

Practice implications

The results indicate that doctors adjust their service provision based on patient engagement online, emphasizing the importance role of patients in self-report health conditions and concerns. Patients are encouraged to adopt proactive engagement to facilitate the effective online doctor- patient communication, and ultimately improve the quality of online health consultations. In addition, the doctors are expected to be more patient in OHCs compared to offline, and help patients to align their online engagement types accordingly.
{"title":"Impact of patient engagement types on doctors’ service provision in online health communities","authors":"Wei Zhang ,&nbsp;Jingwen Xuan ,&nbsp;Mingxuan Cai ,&nbsp;Magdalena Kludacz-Alessandri ,&nbsp;Richard Evans","doi":"10.1016/j.pec.2025.108700","DOIUrl":"10.1016/j.pec.2025.108700","url":null,"abstract":"<div><h3>Objectives</h3><div>Online Health Communities (OHCs) contributes to patient access to health information and doctor-patient communication. However, how patient engagement types influence doctor service provision in OHCs remains unclear.</div></div><div><h3>Methods</h3><div>With the PACE system, this study employs content analysis and clustering methods to examine the relationship between patient engagement types and doctor service provision. A qualitative study utilizing discourse analysis of online doctor-patient communication was conducted. A total of 300 consultation records from the Chinese OHC, Ding Xiang Doctor (DXY), were collected between August 1 and October 31, 2023.</div></div><div><h3>Results</h3><div>The study identifies four patient engagement types, including emotional disclosure, decision-making engagement, consumption-oriented, and doctor-driven types. Discourse analysis reveals that doctors adjust their communication strategies according to patient engagement types, prioritizing service provision and communication tasks differently. Specifically, doctors turn to 1) respond with more empathy to emotional disclosure patients, providing more comforting words; 2) discuss more with decision-making engagement patients on treatment plan and provide more medical explanations; 3) focus more on information provision by answering patient inquiries with less interaction with consumption-oriented patients; and 4) demonstrate more authority with higher frequency of use of closed questions, outlining possible conditions and providing concise diagnostic advice with doctor-driven patients.</div></div><div><h3>Conclusions</h3><div>This study explores the impact of patient engagement in OHCs on doctor service provision. It reveals that doctors adapt their communication approaches based on the patient engagement types.</div></div><div><h3>Practice implications</h3><div>The results indicate that doctors adjust their service provision based on patient engagement online, emphasizing the importance role of patients in self-report health conditions and concerns. Patients are encouraged to adopt proactive engagement to facilitate the effective online doctor- patient communication, and ultimately improve the quality of online health consultations. In addition, the doctors are expected to be more patient in OHCs compared to offline, and help patients to align their online engagement types accordingly.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108700"},"PeriodicalIF":2.9,"publicationDate":"2025-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143420151","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}
引用次数: 0
“What can I trust”: Exploring impact of dual-channel service review quality on patients’ online healthcare choices
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-07 DOI: 10.1016/j.pec.2025.108699
Xinyi Lu , Minwei Lin , Yinsheng Zhang , Haiyan Wang

Objective

Online reviews are crucial for consumer decision-making, especially in online health communities (OHCs), where patients rely on reviews of physicians’ services. This study aims to evaluate the quality of both offline and online service reviews and examine the impact of review quality on patients’ online choices.

Methods

This study developed models to evaluate the quality of dual-channel service reviews from OHCs. Based on signaling theory, we investigated how review quality affected patients’ online choices. Data, including online and offline reviews of 1958 physicians, were analyzed using ordinary least squares regression to test the hypotheses.

Results

Dual-channel service review quality positively affected patients’ online choices, with a negative synergistic effect between offline and online review quality. Physician engagement positively moderated the effect of offline review quality on patients’ online choices.

Conclusions

This study makes valuable theoretical contributions by providing models for evaluating dual-channel review quality and insights into patients’ decision-making in OHCs.

Practice Implications

Healthcare platforms can use these models to evaluate reviews and promote high-quality reviews. Physicians can balance their efforts between offline and online services. Patients are encouraged to consider reviews from both channels and to provide authentic feedback to enhance transparency and trust.
{"title":"“What can I trust”: Exploring impact of dual-channel service review quality on patients’ online healthcare choices","authors":"Xinyi Lu ,&nbsp;Minwei Lin ,&nbsp;Yinsheng Zhang ,&nbsp;Haiyan Wang","doi":"10.1016/j.pec.2025.108699","DOIUrl":"10.1016/j.pec.2025.108699","url":null,"abstract":"<div><h3>Objective</h3><div>Online reviews are crucial for consumer decision-making, especially in online health communities (OHCs), where patients rely on reviews of physicians’ services. This study aims to evaluate the quality of both offline and online service reviews and examine the impact of review quality on patients’ online choices.</div></div><div><h3>Methods</h3><div>This study developed models to evaluate the quality of dual-channel service reviews from OHCs. Based on signaling theory, we investigated how review quality affected patients’ online choices. Data, including online and offline reviews of 1958 physicians, were analyzed using ordinary least squares regression to test the hypotheses.</div></div><div><h3>Results</h3><div>Dual-channel service review quality positively affected patients’ online choices, with a negative synergistic effect between offline and online review quality. Physician engagement positively moderated the effect of offline review quality on patients’ online choices.</div></div><div><h3>Conclusions</h3><div>This study makes valuable theoretical contributions by providing models for evaluating dual-channel review quality and insights into patients’ decision-making in OHCs.</div></div><div><h3>Practice Implications</h3><div>Healthcare platforms can use these models to evaluate reviews and promote high-quality reviews. Physicians can balance their efforts between offline and online services. Patients are encouraged to consider reviews from both channels and to provide authentic feedback to enhance transparency and trust.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108699"},"PeriodicalIF":2.9,"publicationDate":"2025-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143395309","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}
引用次数: 0
Designing and maturing the OKRA-Compass for breaking bad news in the German pediatric oncology setting: A participatory action research study
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-06 DOI: 10.1016/j.pec.2025.108694
Kerstin Dittmer , Frank Vitinius , Isabel Hamm , Tobias Däbritz , Stefanie Hänse , Marc Hoemberg , Anne Lorenz , Rainer Misgeld , Norbert W. Paul , Walther Stamm , Theresia Krieger

Objective

Breaking Bad News (BBN) is challenging in pediatric oncology. It requires tailored, sensitive communication to families and children at critical moments. However, pediatric oncology lacks context-specific BBN support tools. The OKRA project aims to address this gap by developing and refining a support tool with a participatory approach.

Methods

The OKRA-Compass was developed using a participatory action research (PAR) approach with mixed methods. It involved iterative refinement across five pediatric oncology clinics. Improvements were based on feedback from focus groups, surveys, and written suggestions. The interdisciplinary research team collaborated with healthcare professionals (HCPs) as coresearchers to ensure practical applicability, acceptance, and user-centered design.

Results

The OKRA-Compass provides a structured but flexible framework for BBN in pediatric oncology, comprising a comprehensive guidebook, pocket guide, and checklists. Its application improved team preparation, communication style, and role clarity during emotionally demanding encounters.

Conclusion

The structured framework of the OKRA-Compass aligns theoretical foundations with clinical practice. Its participatory development process fostered collaboration and ownership among HCPs, making it a valuable resource for improving communication in pediatric oncology.

Practice implications

Integrating the OKRA-Compass into training programs and clinical routines may promote empathic, patient-centered care. We recommend interprofessional training to further support its application and dissemination.
{"title":"Designing and maturing the OKRA-Compass for breaking bad news in the German pediatric oncology setting: A participatory action research study","authors":"Kerstin Dittmer ,&nbsp;Frank Vitinius ,&nbsp;Isabel Hamm ,&nbsp;Tobias Däbritz ,&nbsp;Stefanie Hänse ,&nbsp;Marc Hoemberg ,&nbsp;Anne Lorenz ,&nbsp;Rainer Misgeld ,&nbsp;Norbert W. Paul ,&nbsp;Walther Stamm ,&nbsp;Theresia Krieger","doi":"10.1016/j.pec.2025.108694","DOIUrl":"10.1016/j.pec.2025.108694","url":null,"abstract":"<div><h3>Objective</h3><div>Breaking Bad News (BBN) is challenging in pediatric oncology. It requires tailored, sensitive communication to families and children at critical moments. However, pediatric oncology lacks context-specific BBN support tools. The OKRA project aims to address this gap by developing and refining a support tool with a participatory approach.</div></div><div><h3>Methods</h3><div>The OKRA-Compass was developed using a participatory action research (PAR) approach with mixed methods. It involved iterative refinement across five pediatric oncology clinics. Improvements were based on feedback from focus groups, surveys, and written suggestions. The interdisciplinary research team collaborated with healthcare professionals (HCPs) as coresearchers to ensure practical applicability, acceptance, and user-centered design.</div></div><div><h3>Results</h3><div>The OKRA-Compass provides a structured but flexible framework for BBN in pediatric oncology, comprising a comprehensive guidebook, pocket guide, and checklists. Its application improved team preparation, communication style, and role clarity during emotionally demanding encounters.</div></div><div><h3>Conclusion</h3><div>The structured framework of the OKRA-Compass aligns theoretical foundations with clinical practice. Its participatory development process fostered collaboration and ownership among HCPs, making it a valuable resource for improving communication in pediatric oncology.</div></div><div><h3>Practice implications</h3><div>Integrating the OKRA-Compass into training programs and clinical routines may promote empathic, patient-centered care. We recommend interprofessional training to further support its application and dissemination.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108694"},"PeriodicalIF":2.9,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143350108","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}
引用次数: 0
Lung cancer screening: What do physicians say to reluctant patients and what do patients want them to say?
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-05 DOI: 10.1016/j.pec.2025.108698
Angelo E. D’Addario , Mayuko Ito Fukunaga , Ann M. King , Sonal Singh , Kathleen M. Mazor , Kimberly A. Fisher

Objective

Lung cancer screening (LCS) can detect lung cancer at an earlier stage and reduce lung cancer mortality but can also cause harm. Therefore, physicians are tasked with conveying complex information to help patients make informed decisions. Studies suggest physicians often fall short of this. We characterize how physicians respond to a patient reluctant to undergo LCS and identify communication elements patients respond favorably to.

Method

Physicians responded to a vignette of a reluctant patient. Analogue patients (APs) rated responses and described their preferred response. We analyzed both physician and AP qualitative responses using content analysis and compared mean ratings of physician responses with a particular communication element present to responses without that element.

Results

We identified 19 communication elements in 42 physician responses and 24 elements in 64 AP responses. We identified 5 elements that were associated with higher AP ratings and how often physicians engaged in them (e.g., showing desire to understand the patient as a person, occurring in 21 % of responses.)

Conclusion

We identify communication elements in physician and AP responses and reveal gaps between patients' desires and strategies employed by physicians.

Practical Implications

Findings suggest that incorporating specific communication behaviors may enhance patient receptivity regarding LCS.
{"title":"Lung cancer screening: What do physicians say to reluctant patients and what do patients want them to say?","authors":"Angelo E. D’Addario ,&nbsp;Mayuko Ito Fukunaga ,&nbsp;Ann M. King ,&nbsp;Sonal Singh ,&nbsp;Kathleen M. Mazor ,&nbsp;Kimberly A. Fisher","doi":"10.1016/j.pec.2025.108698","DOIUrl":"10.1016/j.pec.2025.108698","url":null,"abstract":"<div><h3>Objective</h3><div>Lung cancer screening (LCS) can detect lung cancer at an earlier stage and reduce lung cancer mortality but can also cause harm. Therefore, physicians are tasked with conveying complex information to help patients make informed decisions. Studies suggest physicians often fall short of this. We characterize how physicians respond to a patient reluctant to undergo LCS and identify communication elements patients respond favorably to.</div></div><div><h3>Method</h3><div>Physicians responded to a vignette of a reluctant patient. Analogue patients (APs) rated responses and described their preferred response. We analyzed both physician and AP qualitative responses using content analysis and compared mean ratings of physician responses with a particular communication element present to responses without that element.</div></div><div><h3>Results</h3><div>We identified 19 communication elements in 42 physician responses and 24 elements in 64 AP responses. We identified 5 elements that were associated with higher AP ratings and how often physicians engaged in them (e.g., showing desire to understand the patient as a person, occurring in 21 % of responses.)</div></div><div><h3>Conclusion</h3><div>We identify communication elements in physician and AP responses and reveal gaps between patients' desires and strategies employed by physicians.</div></div><div><h3>Practical Implications</h3><div>Findings suggest that incorporating specific communication behaviors may enhance patient receptivity regarding LCS.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108698"},"PeriodicalIF":2.9,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143350109","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}
引用次数: 0
Personalized medical approach: A strategy to enhance parents' psychological well-being in child care
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-02 DOI: 10.1016/j.pec.2025.108695
Anna Ayu Herawati, Ahmad Syaf ya Habibi, Ibrahim Al Hakim, Syamsu Yusuf LN, Ilfiandra, Erfan Ramadhani, Rizky Andana Pohan
Medical decision-making in child care presents unique challenges that can significantly impact parents' psychological well-being. This paper highlights the urgent need to integrate personalized strategies into medical decision-making to alleviate anxiety and foster post-traumatic growth. It advocates for longitudinal studies to explore the long-term effects of personalized approaches in medical decision-making. By equipping healthcare providers with training on effectively engaging parents, healthcare systems can create a more inclusive support environment that strengthens family psychological resilience. In this way, parents feel valued and trusted as integral members of the care team, which can significantly reduce their sense of helplessness and enhance emotional resilience during their child's medical care.
{"title":"Personalized medical approach: A strategy to enhance parents' psychological well-being in child care","authors":"Anna Ayu Herawati,&nbsp;Ahmad Syaf ya Habibi,&nbsp;Ibrahim Al Hakim,&nbsp;Syamsu Yusuf LN,&nbsp;Ilfiandra,&nbsp;Erfan Ramadhani,&nbsp;Rizky Andana Pohan","doi":"10.1016/j.pec.2025.108695","DOIUrl":"10.1016/j.pec.2025.108695","url":null,"abstract":"<div><div>Medical decision-making in child care presents unique challenges that can significantly impact parents' psychological well-being. This paper highlights the urgent need to integrate personalized strategies into medical decision-making to alleviate anxiety and foster post-traumatic growth. It advocates for longitudinal studies to explore the long-term effects of personalized approaches in medical decision-making. By equipping healthcare providers with training on effectively engaging parents, healthcare systems can create a more inclusive support environment that strengthens family psychological resilience. In this way, parents feel valued and trusted as integral members of the care team, which can significantly reduce their sense of helplessness and enhance emotional resilience during their child's medical care.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"134 ","pages":"Article 108695"},"PeriodicalIF":2.9,"publicationDate":"2025-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143331151","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}
引用次数: 0
Chatbot for patient education for prenatal aneuploidy testing: A multicenter randomized controlled trial 聊天机器人用于产前非整倍体检测患者教育:一项多中心随机对照试验。
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-01 DOI: 10.1016/j.pec.2024.108557
Bowdoin Su , Renee Jones , Kelly Chen , Emilia Kostenko , Maximilian Schmid , Andrea L. DeMaria , Andrew Villa , Monte Swarup , Jennifer Weida , Methodius G. Tuuli

Introduction

Digital tools could assist obstetric providers by delivering information given increasing options for fetal aneuploidy screening.

Purpose

To determine the impact of a chatbot for pre-test education and counseling in low-risk pregnancies.

Methods

Two sites participated in this randomized controlled trial. Patients in the intervention group used a chatbot prior to the provider visit, while patients in the control group only received education by the provider. The primary outcome was change in patient knowledge scores after provider education. Analysis was by intention to treat.

Results

Overall, 258 women participated (n = 130; intervention and n = 128; control). Knowledge gain was significantly higher among patients using the chatbot (mean increase in correct answers [out of 20]: +4.1 vs +1.9, p < 0.001). Both groups reported high satisfaction, with no statistically significant difference between intervention and control groups (mean patient satisfaction [1–10]: 8.2 vs 8.5 respectively, p = 0.35). Providers also reported high satisfaction scores with no significant difference between intervention and control groups (mean provider satisfaction [1 − 10]: 8.7 vs 8.4 respectively, p = 0.13).

Conclusions

Pre-test education via a chatbot can increase patient knowledge of prenatal testing choices, with high patient and provider satisfaction.
数字化工具可以通过提供胎儿非整倍体筛查更多选择的信息来帮助产科提供者。目的:探讨聊天机器人对低危妊娠孕前教育和咨询的影响。方法:随机对照试验分为两组。干预组患者在提供者访问之前使用聊天机器人,而对照组患者仅接受提供者的教育。主要结局是提供者教育后患者知识得分的变化。分析的目的是治疗。结果:总共有258名女性参与(n = 130;干预,n = 128;控制)。使用聊天机器人的患者的知识增长明显更高(正确答案的平均增长[满分20分]:+4.1 vs +1.9, p)。结论:通过聊天机器人进行的测试前教育可以增加患者对产前检查选择的知识,患者和提供者的满意度都很高。
{"title":"Chatbot for patient education for prenatal aneuploidy testing: A multicenter randomized controlled trial","authors":"Bowdoin Su ,&nbsp;Renee Jones ,&nbsp;Kelly Chen ,&nbsp;Emilia Kostenko ,&nbsp;Maximilian Schmid ,&nbsp;Andrea L. DeMaria ,&nbsp;Andrew Villa ,&nbsp;Monte Swarup ,&nbsp;Jennifer Weida ,&nbsp;Methodius G. Tuuli","doi":"10.1016/j.pec.2024.108557","DOIUrl":"10.1016/j.pec.2024.108557","url":null,"abstract":"<div><h3>Introduction</h3><div>Digital tools could assist obstetric providers by delivering information given increasing options for fetal aneuploidy screening.</div></div><div><h3>Purpose</h3><div>To determine the impact of a chatbot for pre-test education and counseling in low-risk pregnancies.</div></div><div><h3>Methods</h3><div>Two sites participated in this randomized controlled trial. Patients in the intervention group used a chatbot prior to the provider visit, while patients in the control group only received education by the provider. The primary outcome was change in patient knowledge scores after provider education. Analysis was by intention to treat.</div></div><div><h3>Results</h3><div>Overall, 258 women participated (n = 130; intervention and n = 128; control). Knowledge gain was significantly higher among patients using the chatbot (mean increase in correct answers [out of 20]: +4.1 vs +1.9, p &lt; 0.001). Both groups reported high satisfaction, with no statistically significant difference between intervention and control groups (mean patient satisfaction [1–10]: 8.2 vs 8.5 respectively, p = 0.35). Providers also reported high satisfaction scores with no significant difference between intervention and control groups (mean provider satisfaction [1 − 10]: 8.7 vs 8.4 respectively, p = 0.13).</div></div><div><h3>Conclusions</h3><div>Pre-test education via a chatbot can increase patient knowledge of prenatal testing choices, with high patient and provider satisfaction.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"131 ","pages":"Article 108557"},"PeriodicalIF":2.9,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142792714","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Instruments evaluating the duration and pace of clinical encounters: A scoping review 评估临床接触持续时间和速度的仪器:范围综述。
IF 2.9 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2025-02-01 DOI: 10.1016/j.pec.2024.108591
Cristian Soto Jacome , Nataly R. Espinoza Suarez , Elizabeth H. Golembiewski , Derek Gravholt , Aidan Crowley , Meritxell Urtecho , Montserrat Garcia Leon , Dron Mandhana , Dawna Ballard , Marleen Kunneman , Larry Prokop , Victor M. Montori

Objective

Hurried encounters in clinical settings contribute to dissatisfaction among both patients and clinicians and may indicate and contribute to low-quality care. We sought to identify patient- or clinician-reported instruments concerning this experience of time in clinical encounters.

Methods

We searched multiple databases from inception through July 2023. Working in duplicate without restrictions by language or clinical context, we identified published instruments or single items measuring perceptions of time adequacy in clinical encounters. We characterized these by time domain (perceived duration or pace of the encounter), responder (patient or clinician), and reference (experience of care in general or of a particular encounter).

Results

Of the 96 instruments found, none focused exclusively on perception of time adequacy in clinical encounters. Nonetheless, these instruments contained 107 time-related items. Of these, 81 items (77 %) measured the perception of the encounter duration, assessing whether there was adequate consultation time overall or for specific tasks (e.g., listening to the patient, exploring psychosocial issues, formulating the care plan). Another 19 (18 %) assessed encounter pace, and 7 (7 %) assessed both duration and pace. Pace items captured actions perceived as rushed or hurried or the perception that patients and clinicians felt pressed for time or rushed. Patients were the respondents for 76 (71 %) and clinicians for 24 (22 %) items. Most patient-reported items (48 of 76) referred to the patient’s general care experience.

Conclusion

There are existing items to capture patient and clinician perceptions of the duration and/or pace of clinical encounters. Further work should ascertain their ability to identify hurried consultations and to detect the effect of interventions to foster unhurried encounters.

Practice implications

The available items assessing patient and clinician perceptions of duration and pace can illuminate the experience of time adequacy in clinical encounters as a target for quality improvement interventions. These items may capture unintended consequences on perceived time for care of interventions to improve healthcare access and efficiency.
目的:临床环境中的匆忙相遇会导致患者和临床医生的不满,并可能表明并导致低质量的护理。我们试图确定患者或临床医生报告的有关临床接触中时间体验的工具。方法:检索从成立到2023年7月的多个数据库。在不受语言或临床背景限制的情况下,我们确定了已发表的测量临床接触中时间充分性的工具或单个项目。我们通过时域(感知到的接触持续时间或速度)、响应者(患者或临床医生)和参考(一般或特定接触的护理经验)来描述这些特征。结果:在发现的96个工具中,没有一个专门关注临床接触中时间充分性的感知。然而,这些文书载有107个与时间有关的项目。其中,81个项目(77%)测量了对接触持续时间的感知,评估是否有足够的总体咨询时间或特定任务(例如,倾听患者,探索心理社会问题,制定护理计划)。另外19例(18%)评估了接触速度,7例(7%)评估了持续时间和速度。Pace项目捕获了被认为是匆忙或匆忙的行为,或者患者和临床医生感到时间紧迫或匆忙的感觉。患者回答了76项(71%),临床医生回答了24项(22%)。大多数患者报告的项目(76项中的48项)涉及患者的一般护理经历。结论:现有的项目可以捕捉患者和临床医生对临床接触的持续时间和/或速度的看法。进一步的工作应确定它们是否有能力查明匆忙的协商并查明干预措施对促进不慌不忙的接触的影响。实践意义:评估患者和临床医生对持续时间和速度的感知的可用项目可以阐明临床接触中时间充分性的经验,作为质量改进干预措施的目标。这些项目可能会对改善医疗保健获取和效率的干预措施的感知护理时间产生意想不到的影响。
{"title":"Instruments evaluating the duration and pace of clinical encounters: A scoping review","authors":"Cristian Soto Jacome ,&nbsp;Nataly R. Espinoza Suarez ,&nbsp;Elizabeth H. Golembiewski ,&nbsp;Derek Gravholt ,&nbsp;Aidan Crowley ,&nbsp;Meritxell Urtecho ,&nbsp;Montserrat Garcia Leon ,&nbsp;Dron Mandhana ,&nbsp;Dawna Ballard ,&nbsp;Marleen Kunneman ,&nbsp;Larry Prokop ,&nbsp;Victor M. Montori","doi":"10.1016/j.pec.2024.108591","DOIUrl":"10.1016/j.pec.2024.108591","url":null,"abstract":"<div><h3>Objective</h3><div>Hurried encounters in clinical settings contribute to dissatisfaction among both patients and clinicians and may indicate and contribute to low-quality care. We sought to identify patient- or clinician-reported instruments concerning this experience of time in clinical encounters.</div></div><div><h3>Methods</h3><div>We searched multiple databases from inception through July 2023. Working in duplicate without restrictions by language or clinical context, we identified published instruments or single items measuring perceptions of time adequacy in clinical encounters. We characterized these by time domain (perceived duration or pace of the encounter), responder (patient or clinician), and reference (experience of care in general or of a particular encounter).</div></div><div><h3>Results</h3><div>Of the 96 instruments found, none focused exclusively on perception of time adequacy in clinical encounters. Nonetheless, these instruments contained 107 time-related items. Of these<strong>,</strong> 81 items (77 %) measured the perception of the encounter duration, assessing whether there was adequate consultation time overall or for specific tasks (e.g., listening to the patient, exploring psychosocial issues, formulating the care plan). Another 19 (18 %) assessed encounter pace, and 7 (7 %) assessed both duration and pace. Pace items captured actions perceived as rushed or hurried or the perception that patients and clinicians felt pressed for time or rushed. Patients were the respondents for 76 (71 %) and clinicians for 24 (22 %) items. Most patient-reported items (48 of 76) referred to the patient’s general care experience<strong>.</strong></div></div><div><h3>Conclusion</h3><div>There are existing items to capture patient and clinician perceptions of the duration and/or pace of clinical encounters. Further work should ascertain their ability to identify hurried consultations and to detect the effect of interventions to foster unhurried encounters.</div></div><div><h3>Practice implications</h3><div>The available items assessing patient and clinician perceptions of duration and pace can illuminate the experience of time adequacy in clinical encounters as a target for quality improvement interventions. These items may capture unintended consequences on perceived time for care of interventions to improve healthcare access and efficiency.</div></div>","PeriodicalId":49714,"journal":{"name":"Patient Education and Counseling","volume":"131 ","pages":"Article 108591"},"PeriodicalIF":2.9,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142774210","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}
引用次数: 0
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Patient Education and Counseling
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