Journal of Patient-Centered Research and Reviews最新文献

{"title":"Joy to the Rehabilitation World: A Call to Incorporate Enjoyment Into Clinical Practice.","authors":"Cristina Colón-Semenza, Raymond Jones, Winston Kennedy","doi":"10.17294/2330-0698.2216","DOIUrl":"10.17294/2330-0698.2216","url":null,"abstract":"<p><p>Although multiple academic disciplines recognize the motivational power of joy, rehabilitation professionals have, historically, underemphasized this construct in clinical practice. In addition, many clinicians report persistent challenges in motivating patients to adhere to prescribed exercise regimens. In response, there is growing advocacy for integrating affective-based interventions into practice. This overview aims to 1) raise awareness among rehabilitation professionals about the role of joy in physical rehabilitation, 2) illustrate how joy influences physical activity engagement and recovery outcomes, 3) outline evidence-based strategies for enhancing joy in clinical settings, and 4) introduce validated measures of joy suitable for use in practice. By embedding enjoyment into rehabilitation, the goal is to strengthen patient motivation both during and beyond clinical encounters, ultimately improving health behaviors and outcomes.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 3","pages":"134-141"},"PeriodicalIF":2.5,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13623027/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081251","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":"Under Pressure and Underrecognized: The Role of Social Workers and Case Managers in Screening for Social Determinants of Health in the United States.","authors":"Melissa L Habrat, Lindsay D Nelson, David A Nelson","doi":"10.17294/2330-0698.2234","DOIUrl":"10.17294/2330-0698.2234","url":null,"abstract":"<p><p>Social determinants of health (SDOH) screening is increasingly embedded in clinical care, yet the work of asking, documenting, and responding to social needs often falls to social workers and nurses or professional case managers who operate under significant time, staffing, and system constraints. We conducted a narrative review to examine how SDOH influence outcomes, identify systemic and emotional barriers to effective screening, and synthesize evidence-informed strategies that support implementation. Across included sources, findings clustered into three domains: challenges in integrating screening (policy and accreditation pressure, staffing and resource constraints, EHR documentation and interoperability limits, closed-loop referral and cross-sector partnership gaps, and training and role ambiguity), the emotional and professional toll (burnout, moral distress, and compassion fatigue, amplified by repeated identification of needs without reliable pathways to act), and trust and data accuracy (relational conditions for disclosure and how privacy, stigma, and documentation concerns shape data quality and downstream action). Promising practices emphasized clear communication about the purpose of screening, nonjudgmental and culturally responsive approaches, team-based workflows with role clarity, usable documentation processes, and referral infrastructure capable of follow-through. Overall, SDOH screening is advancing faster than workforce capacity and systems can respond, underscoring the need for investments that align expectations with actionable care pathways.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 3","pages":"126-133"},"PeriodicalIF":2.5,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13623025/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081306","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 Mixed Methods Study of Inpatients' Experiences, Priorities, and Health-Related Quality of Life During High-Flow Nasal Cannula Therapy.","authors":"Cintamani H Ellsworth, Rebecca S Bartlett","doi":"10.17294/2330-0698.2237","DOIUrl":"10.17294/2330-0698.2237","url":null,"abstract":"<p><strong>Purpose: </strong>High-flow nasal cannula (HFNC) is an oxygen delivery method with numerous benefits for severely ill patients. There is a paucity of research focused on the perspectives of patients receiving HFNC oxygen therapy. This study aimed to engage with patients to gain a clearer understanding of their experiences, priorities, and health-related quality of life.</p><p><strong>Methods: </strong>A cross-sectional, mixed methods study was completed with 10 adult inpatients who had received HFNC oxygen therapy during their hospital admission. Semi-structured interviews and the Patient Reported Outcomes Measurement Information System (PROMIS) Global Health Scale were used to identify participant perceptions of their physical and mental health, priorities, and impressions of activities of daily living, such as eating, drinking, and communicating.</p><p><strong>Results: </strong>T-scores from the PROMIS Global Health Scale indicated that overall, participants rated their physical health as fair and their mental health as good. Analysis of semi-structured interviews identified three themes: Perceptions of the HFNC Experience, Re-conceptualizing Health in the Context of Severe Illness, and Redirecting the Interview Narrative.</p><p><strong>Conclusions: </strong>Inpatients on HFNC can be supported by addressing their concerns related to unpleasant side effects of the HFNC device, facilitating their return to autonomy, and identifying and removing barriers to social support systems. Healthcare institutions can demonstrate their commitment to patient-centered care by seeking to understand the patient perspective and using that information to guide organizational decisions.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 3","pages":"115-125"},"PeriodicalIF":2.5,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13623029/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081246","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":"Scaling Learning Health Systems: Highlights From the 2026 Health Care Systems Research Network Annual Conference.","authors":"Deborah Hamlin","doi":"10.17294/2330-0698.2384","DOIUrl":"10.17294/2330-0698.2384","url":null,"abstract":"<p><p>The Health Care Systems Research Network convened for its 2026 Annual Conference on April 21- 23 in Dallas, Texas, at the Sheraton Dallas Hotel. The conference centered on the theme, \"Scaling Learning Health Systems: Data-Driven Pathways to Better Outcomes,\" featuring 99 peer-reviewed abstract and panel presentations, along with 21 poster presentations, and emphasized the growing role of collaborative, data-enabled research in transforming care delivery and improving patient outcomes.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 3","pages":"145-147"},"PeriodicalIF":2.5,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13623026/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081281","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":"Evaluating the Readability of Online Patient Education Materials for Avascular Necrosis.","authors":"Gabriella B Smith, Grady H Hofmann, Anna V Gussner, Nicole S Pham, Nneoma O Duru, Kevin G Shea","doi":"10.17294/2330-0698.2229","DOIUrl":"10.17294/2330-0698.2229","url":null,"abstract":"<p><strong>Purpose: </strong>Avascular necrosis (AVN) is a progressive pathology affecting pediatric and adult patients. Given the risks of joint collapse and surgery, patients frequently research their condition online. The average reading level in the United States is approximately the eighth-grade level. The National Institutes of Health (NIH) recommend that patient materials be written at or below a sixth-grade level. This study aimed to assess the readability and quality of online AVN resources.</p><p><strong>Methods: </strong>A Google search using the terms \"avascular necrosis\" and \"osteonecrosis\" was conducted, and first-page results were aggregated. Flesch-Kincaid Grade Level, Gunning Fog Index, and Flesch Reading Ease tests were performed to assess the reading levels of these resources. DISCERN scores were determined by two reviewers.</p><p><strong>Results: </strong>Sixteen original general educational articles emerged. Of these, one article (6.25%) was at or below the NIH-recommended reading level. Five articles (31.25%) were at or below the average reading level in the United States. The mean Flesch-Kincaid Grade Level was 9.3 ± 1.8, the mean Gunning Fog Index was 10.6 ± 2.3, and the mean Flesch Reading ease was 46.7 ± 11.3. The mean DISCERN score was 59.7 ± 7.8, which is classified as \"good quality.\"</p><p><strong>Conclusions: </strong>The readability of first-page Google results for AVN-related patient resources is at an education level higher than that recommended by the NIH and higher than the average national reading level. This study highlights the necessity for developing high-quality, accessible patient educational materials about AVN that are tailored to an appropriate level for patients and their families.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 3","pages":"108-114"},"PeriodicalIF":2.5,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13623024/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081258","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":"Abstracts From the 2026 Health Care Systems Research Network (HCSRN) Annual Conference, Dallas, Texas.","authors":"","doi":"10.17294/2330-0698.2385","DOIUrl":"10.17294/2330-0698.2385","url":null,"abstract":"<p><p>The Health Care Systems Research Network (HCSRN) comprises 18 learning health systems with integrated care delivery and embedded research units. The network's annual conference serves as a forum for research teams from member institutions to disseminate project findings, explore scientific collaborations, and share insights about population-based research practices that can measurably improve health and health care for all. The theme of this year's conference was \"Scaling Learning Health Systems: Data-Driven Pathways to Better Outcomes.\" Abstracts presented at HCSRN 2026 are published in this issue supplement of the Journal of Patient-Centered Research and Reviews, the journal of record for HCSRN's annual conference proceedings.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 3","pages":"148-207"},"PeriodicalIF":2.5,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13623030/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081262","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 Reflection on Growing Up With Hyperacusis.","authors":"Jemma-Tiffany Rosewater, Katherine Melton","doi":"10.17294/2330-0698.2290","DOIUrl":"10.17294/2330-0698.2290","url":null,"abstract":"","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 3","pages":"142-144"},"PeriodicalIF":2.5,"publicationDate":"2026-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13623028/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081295","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":"The Compassionate HEART Patient Questionnaire: Validation and Reliability of a Novel Measure of Relationship-Centered Care.","authors":"Dustin Willis, Everett Lohman, Lida Gharibvand, Andrew Sullivan, Lee Berk","doi":"10.17294/2330-0698.2194","DOIUrl":"10.17294/2330-0698.2194","url":null,"abstract":"<p><strong>Purpose: </strong>To establish the validity and reliability of the Compassionate HEART Patient Questionnaire (CHPQ) for measuring relationship-centered care and exploring associations between patient ratings and mood state changes in patients with persistent pain.</p><p><strong>Methods: </strong>Thirty-nine adults with persistent pain (>3 months) completed pre-/post-interaction Profile of Mood States assessments and rated providers using the Consultation and Relational Empathy (CARE) measure and the novel CHPQ following physical therapy evaluations. Psychometric properties were assessed through factor analysis, concurrent validity (correlation with CARE), and internal reliability (Cronbach's alpha). Pre-post mood changes were analyzed using Wilcoxon signed-rank test.</p><p><strong>Results: </strong>The CHPQ demonstrated good internal consistency (α = 0.86) and moderate correlation with CARE (r = 0.673, p < 0.001). Factor analysis revealed three factors explaining 85.9% of variance: Connected Compassionate Competence (54.3%), Genuine Therapeutic Presence (18.1%), and Relational Alliance (13.5%). Total Mood Disturbance decreased significantly post-interaction (-17.41 points, p < 0.001) with reductions in anger, tension, confusion, depression, and fatigue. Vigor also decreased significantly (-8.70, p < 0.001). CHPQ scores negatively correlated with fatigue reduction (r = -0.493, p = 0.001).</p><p><strong>Conclusions: </strong>The CHPQ shows promising psychometric properties as a comprehensive measure of relationship-centered care. The paradoxical vigor decrease alongside reduced negative affect suggests complex emotional processing during therapeutic encounters. The correlation between CHPQ scores and fatigue reduction indicates that compassionate care may mitigate specific distress aspects in patients with persistent pain. Future research should explore longitudinal outcomes and incorporate qualitative methods.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 2","pages":"76-87"},"PeriodicalIF":2.5,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13209157/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148042615","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":"Development and Psychometric Analysis of an Instrument to Assess Social Stigma Associated with Parkinson's Disease.","authors":"Ana Lourdes Guerra-Anzaldo, Arturo Emmanuel Espinosa-Picos, Karen Itzel Sánchez-Ramírez, Ana Jimena Hernández-Medrano, Amin Cervantes-Arriaga, Ariadna Domínguez-García, Mayela Rodríguez-Violante","doi":"10.17294/2330-0698.2202","DOIUrl":"10.17294/2330-0698.2202","url":null,"abstract":"<p><strong>Purpose: </strong>To develop and report the psychometric properties of a comprehensive scale designed to measure stereotypes and attitudes of the general population towards people with Parkinson's disease (PwP).</p><p><strong>Methods: </strong>The development and analysis of the Parkinson's Disease Stigma Perception scale (PDSP) included four phases: 1) literature review, 2) item development, 3) tests of validity and reliability, and 4) dissemination of a preliminary version. Internal consistency was assessed using Cronbach's alpha, exploratory factor analysis (EFA) to explore underlying structures, and confirmatory factor analysis to test the model's fit.</p><p><strong>Results: </strong>Six (2%) of the 294 survey respondents were disqualified because of incomplete data. The mean age was 38.3±15.9 years, 70.1% were women, and mean education was 16.5±3.37 years. EFA identified three factors with eigenvalues >1 (social avoidance and negative attitudes, prejudice and discrimination, and stereotypes). A root mean square error of approximation of 0.07 indicated acceptable fit, while a comparative fit index of 0.90 suggested adequate fit. Cronbach's alpha and McDonald's omega yielded 0.74 and 0.83, respectively, with low floor effects (2.4%) and no ceiling effect. Item-total correlations ranged from 0.30 to 0.60 (p<0.001).</p><p><strong>Conclusions: </strong>The PDSP demonstrated reliability and validity in assessing stigmatizing attitudes towards PwP. Future studies can further explore the scale's impact and its applicability across various contexts.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 2","pages":"88-97"},"PeriodicalIF":2.5,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13209155/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148042585","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":"Comparison of Early-, Average-, and Late-Onset Pancreatic Cancer in a Multi-Site Cancer Center: Treatment Patterns and Outcomes.","authors":"Chirag K Patel, Jimmy J Hwang, Mohamed E Salem, Kunal C Kadakia","doi":"10.17294/2330-0698.2191","DOIUrl":"10.17294/2330-0698.2191","url":null,"abstract":"<p><strong>Purpose: </strong>The aim of this study was to investigate treatment and outcomes differences, as well as predictors of early mortality, among early-onset pancreatic adenocarcinoma (EOPC, ≤50 years), average-onset pancreatic adenocarcinoma (AOPC, 51-69 years), and late-onset pancreatic adenocarcinoma (LOPC, ≥70 years).</p><p><strong>Methods: </strong>We retrospectively analyzed 333 patients with pancreatic adenocarcinoma at a multi-site center between 2011-2018. Clinical, demographic, and treatment variables were compared by age group. Predictors of early mortality (death ≤6 months from diagnosis) were assessed using multivariable logistic regression. Survival outcomes were evaluated using Kaplan-Meier analyses.</p><p><strong>Results: </strong>Among the 333 patients, 56% were male, and the mean age was 61.5 years. EOPC patients had higher rates of tobacco use (68% vs 54%, p=0.0094) and higher histological grade (57% vs, 41%, p=0.048) than older cohorts. In non-metastatic patients, EOPC patients were more likely to undergo curative intent surgery (70% vs 38%, p≤0.0001) and receive adjuvant radiation (40% vs 15%, p=0.002). Early mortality occurred in 28% of non-metastatic and 59% of metastatic patients, with lower rates in EOPC. Predictors of early mortality included older age, higher neutrophil-to-lymphocyte ratio, lack of surgery, and absence of radiation therapy in univariable analysis; however, none of these factors remained significant in multivariable analysis. Median survival was 11.1 months in EOPC, 8.7 months in AOPC, and 4.3 months in LOPC.</p><p><strong>Conclusions: </strong>EOPC patients demonstrate better survival and receive more treatments than older cohorts. Despite these differences, PC outcomes remain poor across all groups. Further research is warranted to validate early mortality predictors and inflammatory biomarkers in EOPC.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"13 2","pages":"65-75"},"PeriodicalIF":2.5,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13209154/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148042593","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}