Journal of Participatory Medicine最新文献

{"title":"The Patient Monitoring Roundtable as Catalyst for Health Care Innovation: Case Study.","authors":"Elena Hinz, Jasper Wagnitz, Merve Sarica, Anne Rike Flint, Amin Chaoui, Mona Prendke, Louis Agha-Mir-Salim, Felix Balzer, Akira-Sebastian Poncette","doi":"10.2196/82786","DOIUrl":"10.2196/82786","url":null,"abstract":"<p><strong>Background: </strong>In the field of patient monitoring, there often remains a gap between clinical needs and the monitoring technologies available from industry. To conquer this, the Patient Monitoring Roundtable (PMRT) live event series offers a sustainable and structured platform for innovation through focused small-group discussions, prioritizing deep engagement among stakeholders. By establishing a dynamic, low-barrier forum, the PMRT aims to serve as a thought leadership platform in patient monitoring and digital health, driving continuous improvement and shaping the future of health care technology.</p><p><strong>Objective: </strong>This paper pursues 2 main objectives: first, to describe the concept, implementation, and practical insights of the PMRT as a novel format for transdisciplinary collaboration in digital health; second, to evaluate its perceived impact and reception among participants.</p><p><strong>Methods: </strong>The concept and implementation of the format were described using internal planning documents, event materials, and communication records. To evaluate participant reception and perceived impact, a cross-sectional online survey was conducted between October 2024 and January 2025. The questionnaire was distributed at PMRT events and via digital channels, including the PMRT newsletter and LinkedIn.</p><p><strong>Results: </strong>The PMRT was conducted 29 times between January 2022 and June 2025. It is usually structured in a keynote, followed by interactive small group workshops and a consecutive group discussion, and concluded by a networking session. Examples of topics include alarm management, tele-surveillance and care, user testing of monitoring devices, implementation science, data protection and cybersecurity, artificial intelligence in medicine, and interoperability. Following each event, a structured set of postevent activities ensures continued engagement and knowledge dissemination. A total of 47 responses were included in the survey analysis. The 2 most represented professional backgrounds were industry representatives and physicians. Other participants came from nursing, research, or other fields. Most respondents reported having experience in patient monitoring and digital health, with no notable differences across professional backgrounds or gender. More than half had attended several PMRT events. Formats such as small group discussions and workshops were viewed as highly effective in fostering dialogue. Most participants felt they were part of a professional community, and some reported having established new collaborations. Informal exchanges and interactive workshops were seen as the most valuable aspects of the event.</p><p><strong>Conclusions: </strong>The PMRT presents a novel, structured, low-threshold platform for clinical-centered transdisciplinary dialogue, professional networking, and knowledge exchange in the field of digital health. Participant reception confirms high acceptance ","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e82786"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13043008/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147595054","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Co-Designing and Evaluating a Multimodal Digital Application to Enable People With Dementia to Self-Report Quality of Life Patient-Reported Outcome Measures: Co-Design Study and Summative Evaluation.","authors":"David Kernaghan, Kieren Egan, Marilyn Lennon, Roma Maguire","doi":"10.2196/87565","DOIUrl":"10.2196/87565","url":null,"abstract":"<p><strong>Background: </strong>Worldwide, there are an estimated 55 million people living with dementia, with an estimated cost to society of US $1.3 trillion a year. These numbers are predicted to rise, with the dementia population doubling every 20 years, reaching an estimated 152 million by 2050. There is currently no cure for dementia, with the condition having a significant impact on people's independence and quality of life (QoL). It is therefore vital that people living with dementia are given the support that helps them to manage these impacts and optimizes their QoL. To do this, a more personalized and detailed understanding of a patient's daily life is needed. Patient-reported outcome measures (PROMs) have long been associated with significant benefits in other domains, though the use of PROMs in routine dementia care is lacking. Factors such as platform design, literacy, language proficiency, and physical and mental capability can all severely impact the ability of people living with dementia to complete PROMs routinely.</p><p><strong>Objective: </strong>This study aims to co-design and evaluate a novel multimodal digital application to enable people living with dementia to regularly self-report QoL PROMs. The research questions were (1) What features, questions, and modalities do people living with dementia prefer when interacting with a digital application that enables them to self-report QoL PROMs? (2) What are the design considerations and specifications for a digital application to enable people living with dementia to self-report QoL data via PROMs?</p><p><strong>Methods: </strong>People living with dementia, informal caregivers (ICs), and health care professionals (HCPs) participated in iterative co-design workshops and a final summative evaluation to co-design a multimodal digital application from initial concepts to a functional prototype. Prototypes were presented using cognitive walkthroughs and think-aloud protocols, and data were analyzed following framework analysis using interaction design and features voted for by participants using MoSCoW (Must Have, Should Have, Could Have, Won't Have).</p><p><strong>Results: </strong>A total of 25 participants took part in this study (people living with dementia=9, ICs=4, and HCPs=12) developing and evaluating a total of 34 prototypes into a single final functional multimodal prototype that can collect PROMs using text, visuals, and voice.</p><p><strong>Conclusions: </strong>A functional prototype for a novel digital application was developed that enables people living with dementia to regularly self-report QoL PROMs, which was then successfully evaluated by people living with dementia, ICs, and HCPs. The prototype was co-designed with direct involvement from people living with dementia during every stage of development, and this is one of the first studies to evaluate perceptions from key stakeholders (including people living with dementia, ICs, and HCPs) regarding the use of elect","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e87565"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13043077/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147595012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Care Transitions Electronic Clinical Pathway for Patients With Chronic Conditions: Qualitative Secondary Analysis.","authors":"Joanne Roman Jones, Hongyi Wu, Christian J Tejeda, Allison B McCoy, Lipika Samal, Patricia C Dykes","doi":"10.2196/83235","DOIUrl":"10.2196/83235","url":null,"abstract":"<p><strong>Background: </strong>Understanding patient educational requirements for care transitions is crucial for ensuring safe and effective care for patients with multiple chronic conditions (MCCs).</p><p><strong>Objective: </strong>Within a larger study developing an electronic clinical (e-clinical) pathway to support the safe transition for patients with MCCs from hospital to home and then to primary care, this study identified, evaluated, and integrated content to meet the educational requirements of potential end users of the e-clinical pathway. Participants in the primary study described preferred education content, education considerations, and education presentation and display.</p><p><strong>Methods: </strong>This study conducted a secondary qualitative analysis of transcripts from individual interviews (n=12 health care providers and staff) and focus groups (n=11 patient advisors) by using an inductive/deductive hybrid thematic analysis to explore the educational requirements of patients with MCCs for the e-clinical pathway.</p><p><strong>Results: </strong>We identified the following themes regarding specific education requirements for MCC transitions: (1) essential end-user education includes condition-specific, nutrition-specific, and medication-related content; (2) education must be truthful, accessible, and consider end-user health literacy; and (3) education presentation can be enhanced with graphics, reminders, and end-user resources.</p><p><strong>Conclusions: </strong>The findings were used to develop an educational pathway with targeted and tailored content to support patients with MCCs as they transition from acute hospitalization back to their primary care provider, which was implemented in the study app. Study findings contribute to a more nuanced understanding of end-user education requirements and informed enhancements to the patient-facing app used in the primary study.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e83235"},"PeriodicalIF":0.0,"publicationDate":"2026-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13069371/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147533453","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Community Perceptions of Integrating Community Health Workers and Telehealth Services for Chronic Disease Management in a Rural Island Community: A Qualitative Study.","authors":"Jose G Perez-Ramos, Scott McIntosh, Joselyn Wei Chen, Jessica Alicea-Vellon, Carlos E Rodriguez-Diaz","doi":"10.2196/86907","DOIUrl":"10.2196/86907","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Rural and isolated communities, such as Culebra, Puerto Rico, face significant health care challenges due to geographic isolation, limited medical resources, and socioeconomic disadvantages. Chronic diseases, particularly diabetes and hypertension, are highly prevalent and contribute to poor health outcomes. Telehealth services (THS) and community health workers (CHWs) have been identified as effective interventions for improving health care access in underserved areas. This study is grounded in the principles of community-oriented primary care, which emphasizes the integration of primary care and public health for a defined community, and positions the combination of CHWs and THS as a practical application of this model in an isolated island setting.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aimed to explore community perceptions and attitudes toward integrating THS with the support of CHWs to improve chronic disease management in Culebra, Puerto Rico.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A qualitative study using semistructured individual interviews was conducted with 20 patients from Culebra's Federally Qualified Health Center. Interviews were guided by the socioecological model to assess community perspectives at the individual, interpersonal, community, and societal levels. Thematic analysis was conducted using Dedoose by the principal investigator and a research assistant, with coding discrepancies resolved through negotiated agreement. Translation and back-translation of themes followed the Brislin method. The study adhered to the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Thematic analysis revealed three primary themes: (1) the pervasive impact of social determinants of health on daily life and health care access, (2) the valued and trusted role of CHWs in the community, and (3) the dual potential and challenges of THS. CHWs were recognized as critical for improving health care access through appointment assistance, medication management, and emotional support. THS was viewed positively for its potential to reduce transportation barriers and improve continuity of care, although concerns regarding technology access, convenience, and data privacy were also raised. The integration of CHWs and THS was broadly viewed as a promising and trustworthy solution to chronic disease management challenges.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This study highlights the potential of an integrated CHW-assisted THS model as a practical application of community-oriented primary care principles in isolated island communities. The combination of CHWs and THS shows promise for reducing health care disparities and improving chronic disease management. Future research should focus on implementing and evaluating this model through participatory approaches, assessing clinical outcomes and cost-effectiveness, while policy efforts should prioritize THS infrastructure inves","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e86907"},"PeriodicalIF":0.0,"publicationDate":"2026-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13002157/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147487751","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Real-Time Cardiac Biofeedback Intervention: Experiences of Patient and Public Involvement in a Randomized Controlled Trial.","authors":"Marina Bobou, Michal Tanzer, Alkistis Saramandi, Caroline Selai, Paul M Jenkinson, Aikaterini Fotopoulou","doi":"10.2196/84737","DOIUrl":"10.2196/84737","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement (PPI) is crucial for enhancing research quality and relevance and addressing health inequalities. PPI ensures that studies tackle relevant and meaningful questions, as there is a recognized need by the research community to document and share PPI studies to advance the field and encourage the adoption of such activities.</p><p><strong>Objective: </strong>The study aimed to provide a detailed report on the PPI activities undertaken to develop and implement a randomized controlled trial of a novel therapeutic tool designed to increase interoception and metacognition (ie, the Interoceptive Insight and Metacognitive Efficacy beliefs [InMe] trial).</p><p><strong>Methods: </strong>The InMe trial integrated insights from experts by experience, as well as from clinical and academic experts. This collaborative approach resulted in the development of a comprehensive trial across 4 main stages-design, delivery, results interpretation, and future planning.</p><p><strong>Results: </strong>Here, we highlighted the unique insights and the added value in incorporating PPI activities into our trial development and implementation, while reporting challenges and shortcomings that were identified throughout this process.</p><p><strong>Conclusions: </strong>PPI activities within the InMe trial led to meaningful changes, while collaborators expressed satisfaction and increased interest in interoception research. Further improvements on how to best support experts by experience when sharing their experiences were also identified.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e84737"},"PeriodicalIF":0.0,"publicationDate":"2026-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12981545/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147445268","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Involvement to Promote Empathy in Preclinical Medical Students: Cross-Sectional Intervention Study.","authors":"Rachel Winter, Jamanda Liddicott, Alice Delmonte, Cameron Dinnie, Amber Bennett-Weston, Mark Hamilton, Jeremy Howick","doi":"10.2196/88184","DOIUrl":"10.2196/88184","url":null,"abstract":"<p><strong>Background: </strong>Despite increasing patient involvement in medical education, research has predominantly focused on involvement in small-group teaching. This study explored what it means to actively and meaningfully involve patients in large-group, lecture-based teaching while avoiding historical paternalistic approaches.</p><p><strong>Objective: </strong>This study aimed to describe the design, implementation, and evaluation of a novel curriculum component involving patients in early-year biomedical, clinical, and social science teaching to promote empathy in medical students.</p><p><strong>Methods: </strong>A 6-step approach to curriculum development was applied to guide the design of this curriculum component, enhancing the existing curriculum by hosting real patients in lectures to add a genuine and authentic patient voice. The design process was supplemented by a coproduction workshop with patients, educators, and students. Patients were recruited to take part via local health care networks and the University of Leicester Patient and Carer Group. Nine modules in years 1 and 2 hosted patients in lectures across the 2023-2024 academic year. A student feedback questionnaire based on previous similar published studies was developed to assess engagement and achievement of learning outcomes.</p><p><strong>Results: </strong>First- and second-year students (N=604) attended mandatory biomedical, clinical, and social science lectures hosting patients throughout the 2023-2024 academic year. In total, 65.6% (396/604) of students completed feedback questionnaires at the end of the year. Most students (340/391, 87%) reported that including patients in lectures increased their feelings of empathy, and 77.5% (307/396) reported that their inclusion improved their engagement with learning.</p><p><strong>Conclusions: </strong>The novel inclusion of real patients and their stories in biomedical, clinical, and social science lecture-based teaching has the potential to improve student learning and enhance feelings of empathy toward patients. Our findings are reproducible and transferable, and the intervention was well received by students.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e88184"},"PeriodicalIF":0.0,"publicationDate":"2026-03-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12978890/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147436534","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patients and Caregivers Leveraging AI to Improve Their Health Care Journey: Case Study and Lessons Learned.","authors":"Mary Beth Schoening, Dustin Cotliar","doi":"10.2196/69790","DOIUrl":"10.2196/69790","url":null,"abstract":"<p><strong>Unlabelled: </strong>Artificial intelligence (AI) is increasingly integrated into everyday life. Yet in health care, patients and families are challenged to understand how AI may be helpful. As a result, real-world patient stories remain scarce. Generative AI can serve as a learning partner to help patients interpret complex medical information, prepare for appointments, and navigate care decisions. A case study is presented from the perspective of a caregiver and a clinician colleague, describing how one family used generative AI (ChatGPT; OpenAI) to better understand test results, possible diagnoses and treatments, prepare for visits, and summarize and share information with an extended care team. This paper also shares tips and lessons learned with others navigating similar health care challenges. A first-hand account of family interactions with ChatGPT is described during a period between diagnostic imaging and surgical consultation. Real-world use of AI by a caregiver is showcased, including strategies used to understand and summarize health record data, querying AI using medical documents, and resulting actions taken by the family. Using the case study as a springboard, the authors provide a separate section to share lessons learned for patients and caregivers in their use of AI. The family reported benefits of AI, including the ability to comprehend health information by translating medical records into patient-friendly language; to emotionally process and prepare for visits; to research diagnoses and treatments; to streamline communication with care teams by using concise patient summaries; and to feel more empowered to take timely, informed action. Generative AI can serve as a valuable companion tool for patients and caregivers navigating complex medical information. By translating results, providing education about diagnoses and treatment options, and helping prepare for visits, AI may reduce care delivery delays and raise family confidence in decision-making. However, limitations exist, and patients and caregivers need to validate AI output to ensure accuracy and privacy.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e69790"},"PeriodicalIF":0.0,"publicationDate":"2026-02-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12923093/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146259647","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Visualizing the Maternal Health Journey for Learning Health Systems: Mixed Methods Combined Experience Approach.","authors":"Amanda L Joseph, Bilikis Oladimeji, Helen Monkman, Simon R Minshall, Melissa C Tan, Yuri Quintana","doi":"10.2196/82944","DOIUrl":"10.2196/82944","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;The United States faces a persistent maternal mortality crisis, with rates far higher than those in other high-income nations. The mortality rate among Black women is more than 3 times that among White women. Traditional data visualizations, such as bar and line charts, often emphasize aggregate outcomes, masking inequities and failing to reflect patient-level experiences.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aimed to address the gaps by taking a systems view and developing a Visualized Combined Experience (VCE) diagram, which is an innovative tool that integrates persona-based storytelling with data visualization to provide a more comprehensive understanding of maternal health outcomes. Specifically, the following research questions were explored: (1) How can the VCE diagram approach be applied to illustrate maternal mortality disparities in the United States? (2) To what extent does this integrated visualization technique reveal connections between individual patient experiences and population-level health outcomes that traditional visualization methods do not? (3) How can the VCE diagram inform a learning health system (LHS)?&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;This mixed methods study used publicly available quantitative data from the US Centers for Disease Control and Prevention and adapted qualitative data from the ProPublica award-winning investigative series \"Lost Mothers\" to construct the VCE diagram through a seven-step process involving the following elements: (1) composite persona derived from publicly available narratives, (2) journey map illustrating patient experiences and health system touchpoints, (3) emotive elements of the patient, (4) Sankey diagram of population-level maternal mortality outcomes, (5) \"closer look\" inset to unmask disparities obscured in aggregate data, (6) evaluation, and (7) data integration.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The VCE diagram revealed critical connections between individual experiences and population-level disparities. When examining mortality rates per 1000 births, Black women had a high rate of 51.2, compared with 16.8 for White women, 14.3 for Hispanic women, and 10.2 for Asian women. The relationship between diagnostic delay and population-level mortality was revealed, with the \"closer look\" inset demonstrating how disparities can be obscured in aggregate data. The VCE diagram supported a more efficient and empathetic understanding of maternal health outcomes.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;The VCE diagram bridges micro-level patient experiences with macro-level population data, holding promise to enhance service evaluation, delivery, and design, and improve health care outcomes. The VCE diagram provides a replicable framework for data visualization that highlights systemic disparities often hidden in aggregate data. Moreover, the availability of structured human experience and service outcome data can provide robust context-specific and situational ","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e82944"},"PeriodicalIF":0.0,"publicationDate":"2026-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12919751/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146228939","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Tough Things You're Going to Have to Go Through\": Dyadic Interview Study Including the Perspectives and Needs of Patients and Their Caregivers Post-Hematopoietic Cell Transplant.","authors":"Amanda Johnson, Eleanor Smeallie, Chloe Roslin, Michelle Rozwadowski, Evan Shereck, Sung Won Choi","doi":"10.2196/81971","DOIUrl":"10.2196/81971","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Patients undergoing hematopoietic cell transplant (HCT) and their caregivers are under a significant amount of stress throughout the HCT process with fear of disease recurrence, graft failure, and many other HCT-related complications. However, the needs and perspectives of patients undergoing HCT and their caregivers as dyadic units over the peri-HCT period are continuing to be studied and are an evolving field of research.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;To better understand patient and caregiver perspectives throughout the HCT course, patients undergoing HCT and their caregivers were able to opt-in to interviews at multiple time points post-HCT as part of a larger study, Roadmap 2.0 (an app intervention trial to support caregivers of patients undergoing HCT).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Semistructured, dyadic (patient and caregiver) interviews took place around hospital discharge, day +30, +60, +90 and +120 post-HCT. Patient and caregiver discussions at each interview centered around a variety of topics including desired post-HCT information, coping, and additional resources for patients and their caregivers with the goal of gathering feedback to better inform future studies after Roadmap 2.0 and better understand the needs and perspectives of patients undergoing HCT and their caregivers. Interviews were transcribed and double-coded with inductive and deductive content analysis using the framework method to identify key findings.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of 10 patient-caregiver dyads participated, resulting in 48 dyadic interviews (1 patient died). Multiple findings emerged out of these rich discussions, including the progression from immediately post-discharge to when patients undergoing HCT and their caregivers were further out from HCT. The progression was as follows: \"desire for data and tracking\" to \"need for specific restrictions and outline on forward progress,\" to \"need for additional directed information as progressing forward,\" to \"bigger picture and getting back to life,\" and concluding with \"reflection and fear.\" Most patients and caregivers felt they were provided sufficient general anticipatory guidance throughout the HCT process but called for more specific expectations and guidance on a variety of issues. Many patients and caregivers used multiple coping strategies during HCT, with their coping strategies largely staying consistent over time. Additionally, the need for further acknowledgment and focus on the stress HCT places on caregivers was frequently discussed.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Patients undergoing HCT and their caregivers were largely satisfied with the information and anticipatory guidance they were given but stressed a desire for more specific information throughout their HCT course. A variety of coping strategies are used by patients and their caregivers post-HCT, and these were consistently used over time. However, increased awareness and acknowledgm","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e81971"},"PeriodicalIF":0.0,"publicationDate":"2026-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12919964/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146228975","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Preferences for Technology-Assisted Patient-Reported Outcomes Measurement of Mental Health Symptoms Among Veterans: Cross-Sectional Survey.","authors":"Bella Etingen, Eric J Richardson, Stephanie L Shimada, Jennifer A Palmer, Ndindam Ndiwane, Robin T Higashi, Felicia R Bixler, Bridget M Smith, Terry J Newton, Timothy P Hogan","doi":"10.2196/83149","DOIUrl":"10.2196/83149","url":null,"abstract":"<p><strong>Background: </strong>The Veterans Health Administration is promoting patient-reported outcome measure (PROM) collection for measurement-based mental health care. Understanding veteran preferences about how and when to complete PROMs is critical to support their implementation.</p><p><strong>Objective: </strong>We examined veteran preferences for timing and use of different technology platforms to complete mental health-related PROMs.</p><p><strong>Methods: </strong>We invited a national sample of 1373 veterans to complete a survey; 858 (62.5%) responded. Surveys asked about veteran preferences for how and when to complete mental health-related PROMs. We characterized responses using descriptive statistics and estimated multiple logistic regression models to examine associations between veteran demographic and health characteristics and preferences for completing PROMs.</p><p><strong>Results: </strong>Most veterans preferred completing PROMs between appointments (607/801, 75.8%) using features of a patient portal (410/801, 51.2%), during appointments (589/801, 73.5%) verbally (413/801, 51.6%), and while at the medical center (480/801, 59.9%) on paper (189/801, 23.6%) or a tablet computer (180/801, 22.5%). Hispanic (vs non-Hispanic) veterans had 3.32 (95% CI 1.04-10.58) times higher odds of preferring to complete PROMs at the medical center, and veterans with lower (vs higher) socioeconomic status had lower odds (odds ratio 0.61, 95% CI 0.40-0.93) of preferring to complete PROMs in between appointments but 1.97 (95% CI 1.23-3.16) times higher odds of preferring to complete PROMs during appointments.</p><p><strong>Conclusions: </strong>As the Veterans Health Administration and other health care systems seek to expand the integration of PROM data into health care services, adaptive and flexible approaches to PROM administration that align with patient preferences, including those that leverage technology platforms in the remote collection of these data, may bolster implementation. Our results indicate that such implementation efforts should consider patient ethnicity and socioeconomic status. Our findings further suggest that these efforts could benefit from incorporating PROM administration into online patient portals, developing mobile health apps that support PROM completion through patients' personal devices in between clinical encounters, and engaging care team members in PROM administration during appointments.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e83149"},"PeriodicalIF":0.0,"publicationDate":"2026-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12949404/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146195771","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}