{"title":"A Quality Improvement Study on Patient-Perceived Participation in Care Decisions at a Comprehensive Stroke Center Using a Standardized Patient Information Tool.","authors":"Ovais Inamullah, London Hendrix, Zachary Jones","doi":"10.1177/23743735261474414","DOIUrl":"10.1177/23743735261474414","url":null,"abstract":"<p><p>Acute stroke care involves complex decisions that may limit patient understanding in care decisions. Review of National Research Corporation (NRC) patient experience survey data at a Comprehensive Stroke Center identified that patient-perceived participation in care decisions was the least scoring domain, prompting a targeted quality improvement intervention. The primary objective was to evaluate whether by introducing a standardized patient information tool, combined with physician reinforcement, improves patient-perceived participation in care decisions for hospitalized stroke patients. A single-center, pre-post quality improvement study was conducted within the inpatient stroke service using a standardized patient information tool and physician education as a combined intervention. Stroke coordinators reviewed the form with the patient and, when necessary, family members. Interrupted time series analysis was used to evaluate changes in patient-perceived participation, based on monthly NRC response scores from September 2024 through December 2025. Interrupted time series analysis showed no statistically significant change in NRC scores associated with the intervention (p = 0.063). The observed differences in pre-intervention versus post-intervention mean NRC scores (62.1% vs, 91.7%) were largely explained by pre-existing fluctuations and a rising pre-intervention trend. Standardized patient education combined with physician engagement did not produce a statistically significant result when analyzed using interrupted time series analysis. While post-intervention slope suggested improved trend, this finding was not statistically significant after controlling for pre-existing trends and monthly variability. However, the wide confidence intervals and limited post-intervention period imply that a modest effect cannot be ruled out. Larger, long-term studies are needed to confirm these findings.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261474414"},"PeriodicalIF":2.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13428823/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148664570","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":"It's More than Warm Communication: A Pre-Registered Analysis of Patient's Compassion Priorities.","authors":"Briar G P Dunn, Nathan S Consedine","doi":"10.1177/23743735261461887","DOIUrl":"10.1177/23743735261461887","url":null,"abstract":"<p><strong>Background: </strong>Compassion is central to healthcare and linked to better outcomes for patients and providers. Past studies have employed small, clinically-specific samples and qualitative designs, producing a characterisation of compassion emphasising communicative and affective elements. What compassion \"looks like\" in primary care remains unclear.</p><p><strong>Objective: </strong>Quantify how doctor behaviours are seen as signalling compassion to primary care patients, consider questions of structure and the possibility that different behaviours might be more or less central to the experience of provider compassion in different groups.</p><p><strong>Methods: </strong>A pre-registered, anonymous, online, survey design recruited 513 patients from the general population. Participants provided demographic and health data before rating behaviours in terms of their importance to compassion.</p><p><strong>Results: </strong>Structural analyses revealed three elements to compassionate behaviour: 'Attentively Diagnoses, Treats, and Refers', 'Positive and Reassuring Communication', and 'Attends to Concerns and Preferences'. Exploratory analyses suggested Māori and male patients saw affective and health deliverables as less important, older and/or preoccupied patients prioritised reassuring communication, and Asian and male patients saw inclusive care and tailored treatment as more important.</p><p><strong>Conclusion: </strong>Consistent with theory, these data suggest that compassion is more than warm or supportive communication but it also involves concrete actions to alleviate suffering; different patient groups may vary in their preferences.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261461887"},"PeriodicalIF":2.0,"publicationDate":"2026-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13428118/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654726","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}
Narjes Abshorshori, Mina Mosallanezhad, Farzad Abaszadeh, Mobin Mottahedi, Marzieh Kargar Jahromi, Fateme Beheshtaeen, Azadeh Amiri
{"title":"Assessing Patient Rights Awareness and Perceived Healthcare Compliance in Surgical Care: Evidence From Southern Iran.","authors":"Narjes Abshorshori, Mina Mosallanezhad, Farzad Abaszadeh, Mobin Mottahedi, Marzieh Kargar Jahromi, Fateme Beheshtaeen, Azadeh Amiri","doi":"10.1177/23743735261473778","DOIUrl":"10.1177/23743735261473778","url":null,"abstract":"<p><p>This multicenter, cross-sectional study aimed to assess patient awareness of their rights and the perceived compliance of healthcare teams with these rights in surgical settings across five hospital systems in southern Iran. A total of 582 surgical inpatients participated, with data collected using two validated scales: the Patient Rights Awareness Questionnaire (PRAQ) and the Healthcare Team Compliance Scale (HTCS). The results revealed that the majority of patients had moderate awareness of their rights, with significant variability across domains. Notably, privacy and confidentiality had the lowest awareness scores. Perceived healthcare team compliance was generally high, but gaps were identified in privacy protection and access to medical records. Key factors influencing awareness and compliance included age, education, type of surgery, and hospital setting. These findings underscore the need for targeted interventions to improve patient rights education and healthcare team training, particularly in high-stress emergency settings. Enhancing patient awareness and compliance with patient rights can ultimately improve the quality and transparency of care.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261473778"},"PeriodicalIF":2.0,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424516/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654781","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}
Martha Carlson, Amy Beumer, Julia Maués, A J Veach, Janice Cowden, Stephanie Walker, Kelly Shanahan, Jo Lynn Collins, Julia Maués
{"title":"Patient Experiences With Antibody-Drug Conjugates: Bridging Efficacy and Quality of Life in Metastatic Breast Cancer Care.","authors":"Martha Carlson, Amy Beumer, Julia Maués, A J Veach, Janice Cowden, Stephanie Walker, Kelly Shanahan, Jo Lynn Collins, Julia Maués","doi":"10.1177/23743735261473943","DOIUrl":"10.1177/23743735261473943","url":null,"abstract":"<p><p>People diagnosed with metastatic breast cancer (MBC) comprise a growing population, with incidence increasing from 5.8 to 7.9 per 100,000 people between 2001 and 2021. Those living with MBC are often the first to receive newly approved breast cancer therapies. Recently, antibody-drug conjugates (ADCs) have become increasingly common across the MBC treatment landscape, yet insufficient practical understanding of dosing and toxicity management remains. In this Patient Perspective, a patient-led effort highlights themes of quality of life for people treated with ADCs, as well as recommendations related to dose finding in clinical trials, toxicity management, and education efforts for healthcare providers and patients.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261473943"},"PeriodicalIF":2.0,"publicationDate":"2026-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13420070/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148632049","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":"Understanding Patient Perspectives on Fertility Counseling During Annual Generalist Obstetrics and Gynecology Visits: A Survey-Based Study.","authors":"Nairi Strauch, Chloe Morgan, Devika Lekshmi, Noopur Ghade","doi":"10.1177/23743735261461885","DOIUrl":"10.1177/23743735261461885","url":null,"abstract":"<p><p>Women are increasingly delaying childbearing and utilizing assisted reproductive technology to achieve pregnancy. As the demand for reproductive endocrinology and infertility (REI) care increases, there is potential for sharing responsibility for fertility counseling and care with generalist obstetrics and gynecology physicians (OB/GYNs). The American College of Obstetrics and Gynecology (ACOG) recommends discussing reproductive plans during annual visits; however there are concerns about the feasibility of guideline implementation due to the comprehensive nature of these visits. The purpose of this study was to explore whether OB/GYN generalists at our outpatient clinic are addressing patients' needs for fertility counseling. An Institutional Review Board (IRB)-approved electronic survey was distributed by Quick Response (QR) code on exam room posters at our clinic between April 1 and August 30, 2024 with a $5.00 gift card incentive. Of the 166 patients who met inclusion criteria, the minority of patients (33%) responded \"yes\" when asked, \"In the last two years, did you discuss your fertility with an OB/GYN at an annual/routine visit?\" Those who had not discussed their fertility with their OB/GYN were significantly more likely to be under age 32 than 32 or older (80% vs. 20%). The majority of patients (64%) who had not discussed fertility responded \"yes\" when asked \"Would you like to discuss fertility at annual visits?\" These findings suggest that generalist OB/GYNs may not be meeting the needs of patients, particularly younger patients, who desire fertility counseling. Concerningly many patients are obtaining information on fertility from sources other than their clinicians.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261461885"},"PeriodicalIF":2.0,"publicationDate":"2026-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13420053/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148632007","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":"Diving Into the Gray Zone: A Patient Perspective on What Patient-Centered DCIS Care Really Means.","authors":"Julia Stalder","doi":"10.1177/23743735261473388","DOIUrl":"10.1177/23743735261473388","url":null,"abstract":"<p><p>Ductal carcinoma in situ (DCIS), often labeled \"Stage 0\" breast cancer, presents a uniquely distressing paradox: a non-invasive diagnosis that prompts invasive treatment. Standard care includes surgery, radiation, and hormone therapy, yet a growing body of research suggests that many cases of DCIS, if left untreated, may never progress to invasive disease. However, clinicians currently lack reliable tools to predict which cases will progress and which will remain indolent, leaving patients to make life-altering treatment decisions amid substantial scientific uncertainty. This uncertainty is compounded by inconsistent communication among providers and a lack of accessible, balanced educational resources - particularly for individuals without access to specialized care. This patient perspective article draws on my lived experience as a woman diagnosed with DCIS to examine how variability in language, risk communication, and decision-making support shapes patient experience. I reflect on the emotional and practical consequences of navigating a DCIS diagnosis and offer experience-informed recommendations to improve transparency, shared decision-making, and patient-centered support. Improving DCIS care will require not only continued research and improved risk stratification, but also a commitment to empathetic communication and infrastructure that equips patients to make informed, value-aligned decisions in the face of uncertainty.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261473388"},"PeriodicalIF":2.0,"publicationDate":"2026-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13401631/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148593861","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}
Delaney Lockwood, Amy Baldwin, Sarah Saint Hamilton, Casey N Bassett, Janette R Hill, Cathy Snapp
{"title":"Emotional Resilience Training to Support Care Partners of People Living with Dementia: A Pilot Study.","authors":"Delaney Lockwood, Amy Baldwin, Sarah Saint Hamilton, Casey N Bassett, Janette R Hill, Cathy Snapp","doi":"10.1177/23743735261461931","DOIUrl":"10.1177/23743735261461931","url":null,"abstract":"<p><p>Care partners of people living with dementia (PLWD) report significantly higher levels of stress, anxiety, and depression than non-care partners. Mindfulness-based programs improve overall well-being, but little research has evaluated the impact of emotional resilience programs for care partners of PLWD. This study reports the design and implementation of a pilot emotional resilience training initiative for care partners of PLWD. Three sessions were held at a monthly care partner support group. Emotional regulation skills were assessed using self-recorded emotional shifts before and after resilience practices. The feasibility and acceptability of the program was assessed using feedback collected through a post-survey and focus session. After participating in resilience practices, 82% of participants reported experiencing increased positive emotion. Most participants plan to use the program tools in the future and agree that their overall well-being improved after the training. Participants also noted that this program would be impactful for other care partners. The findings of this pilot study provide evidence that emotional resilience training may be a beneficial support strategy for care partners of PLWD.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261461931"},"PeriodicalIF":2.0,"publicationDate":"2026-07-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13365663/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148449861","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}
Cheryl D Stults, Su-Ying Liang, Yian Guo, Diana Nguyen, Ridhima Nerlekar, Tony Chen, Minal Bhanushali
{"title":"Impact of a Physician Communication Development Program on Patient Experience Scores.","authors":"Cheryl D Stults, Su-Ying Liang, Yian Guo, Diana Nguyen, Ridhima Nerlekar, Tony Chen, Minal Bhanushali","doi":"10.1177/23743735261461884","DOIUrl":"10.1177/23743735261461884","url":null,"abstract":"<p><p>Patient-reported experience measures (PREMs) are widely used for quality improvement, benchmarking, and physician compensation, yet few large-scale studies have examined interventions to improve scores. We examine the association of an annual, mandatory, peer-led continuing professional development (CPD) program at a large, multispecialty group practice aimed at enhancing patient-clinician communication. This quality improvement study analyzed ambulatory pre-post patient experience surveys from January 2018 to October 2022 for top box ratings for four PREMs focusing on provider communication for \"<i>explains</i>\", \"<i>listens</i>\" to them, \"<i>overall provider rating</i>,\" and would \"<i>recommend</i>\" the practice were modeled using generalized estimating equations, adjusting for patient and provider characteristics. Over 1 million surveys per year were analyzed and the likelihood of top-box response in all four domains increased post implementation in 2019- 2022 compared to 2018 with all adjusted odds ratios > 1.0 and p ≤ 0.001. Our findings suggest CPD programs may improve PREMs in a large healthcare system, across all communication-related domains. However, there could be limits and a plateau to how much a CPD intervention can improve PREMs.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261461884"},"PeriodicalIF":2.0,"publicationDate":"2026-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13354897/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148425246","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}
Dana Dharmakaya Colgan, Diane D Stadler, Tabitha Grow, Mary Ruddick, Thomas Weimbs, Todd E Davenport, Heather Zwickey
{"title":"Telehealth-Based Ketogenic Metabolic Therapy With Lifestyle Interventions for Post-viral Illness: A Research Brief of Patients' Experiences.","authors":"Dana Dharmakaya Colgan, Diane D Stadler, Tabitha Grow, Mary Ruddick, Thomas Weimbs, Todd E Davenport, Heather Zwickey","doi":"10.1177/23743735261459218","DOIUrl":"10.1177/23743735261459218","url":null,"abstract":"<p><strong>Background/objectives: </strong>Infection-associated chronic illnesses are associated with substantial functional impairment that limits participation in traditional in-person research. A fully remote, multicomponent intervention that combines ketogenic metabolic therapy (KMT) with behavioral interventions targets several proposed biological mechanisms underlying these conditions. This study aimed to characterize patient-reported experiences with a fully remote intervention that integrated KMT and thiamine supplementation with behavioral strategies, including circadian entrainment and mindfulness-based resilience coaching.</p><p><strong>Methods: </strong>In this cross-sectional study, quantitative data were collected via online REDCap surveys. Feasibility and acceptability benchmarks included perceived treatment suitability, relevance, safety, and reported treatment adherence. Optimization items evaluated preferred program duration, dosing, and structure, as well as components that respondents identified as most important for future refinement.</p><p><strong>Results: </strong>Among an international sample (<i>n</i>=41), all feasibility and acceptability benchmarks were met: 96% reported the intervention was helpful, 96% recommended it, and 75% felt \"<i>a lot better</i>\" after completion. Respondents provided patient-centered perspectives to optimize the intervention.</p><p><strong>Conclusions: </strong>Incorporating patient perspectives is essential for guiding the development of safe, acceptable, and effective treatment strategies for infection-associated chronic illness, including Long COVID. Strong indicators of feasibility, acceptability, and perceived benefits support the rationale for larger controlled trials to investigate clinical efficacy and the underlying mechanistic pathways of multicomponent metabolic interventions.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261459218"},"PeriodicalIF":2.0,"publicationDate":"2026-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13338534/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148406101","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":"'I Will Never Succeed': An Inductive Thematic Analysis of Psychosocial Challenges Experienced Before Sleeve Gastrectomy Among Patients in Turkey.","authors":"Sabahat Ölcer, Mehmet Tayanc","doi":"10.1177/23743735261458021","DOIUrl":"10.1177/23743735261458021","url":null,"abstract":"<p><p>Our study explored psychosocial experiences in the pre-surgery period that shaped the decision to undergo sleeve gastrectomy, with a focus on self-perception and internalised stigma. Nineteen participants from Turkey were purposively recruited. Semi-structured in-depth interviews were conducted to collect data, which were then analysed thematically with an inductive approach. Seven key themes emerged: body image, social stigma, family dynamics, emotional coping, psychological barriers to weight loss, surgical decision-making, and psychosocial impacts of weight. Participants reported feelings of shame, frustration, and social withdrawal linked to self-blame. Emotional eating was a common coping mechanism, while repeated dieting led to demotivation and exhaustion. Fear and hope influenced surgery decisions, with information seeking alleviating uncertainty. Family relationships both supported and stressed participants, affecting their emotions and health behaviours. These findings underline the complex psychosocial challenges faced before surgery and their influence on decision-making, emphasising the need for supportive and stigma-free care.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261458021"},"PeriodicalIF":2.0,"publicationDate":"2026-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13332300/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148392003","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}