Mark Thomaz Ugliara Barone, Beatrice Vetter, Patrícia Vieira de Luca, Márcio Galvão de Oliveira
{"title":"A Lived Experience Perspective on Empowering People With Diabetes Through Accessible Point-of-Care Technology in Brazil.","authors":"Mark Thomaz Ugliara Barone, Beatrice Vetter, Patrícia Vieira de Luca, Márcio Galvão de Oliveira","doi":"10.1177/23743735251383249","DOIUrl":"10.1177/23743735251383249","url":null,"abstract":"<p><p>In Brazil and many other low- and middle-income countries, noncommunicable conditions (NCCs) or noncommunicable diseases such as diabetes mellitus, chronic kidney disease, and dyslipidemia pose significant health and economic challenges. Motivated by our personal experiences living and/or working with NCCs (including one author with diabetes and another with familial hypercholesterolemia), and our collective roles as advocates, researchers, and healthcare professionals, this article highlights the importance of early management strategies and the potential of point-of-care devices in primary healthcare to improve diagnosis and treatment outcomes.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251383249"},"PeriodicalIF":1.8,"publicationDate":"2025-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12515291/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145287156","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}
Ronaye T Gilsenan, Rhonda E Schwartz, Iris A Gutmanis
{"title":"Clinician-Caregiver Engagement in Older Adult Care. Development of a Validated Caregiver Experience Survey to Inform the Optimization of the Caregiver Role.","authors":"Ronaye T Gilsenan, Rhonda E Schwartz, Iris A Gutmanis","doi":"10.1177/23743735251385309","DOIUrl":"10.1177/23743735251385309","url":null,"abstract":"<p><p><b>Background:</b> Clinicians caring for older adults often lack information on how best to engage with caregivers to optimize patient health and care experiences. The objective of this study was to build a valid survey to better understand clinician-caregiver engagement. <b>Method:</b> Study methods were co-designed with caregivers of older adults and geriatric medicine experts from across Ontario, Canada. Recognized survey research methods were utilized (literature review, survey framework development, draft survey items, cognitive interviews (<i>n</i> = 8), pilot testing (<i>n</i> = 120), and psychometric analysis). <b>Results:</b> The final version of the online \"Caregiver Experience Survey\" includes 11 core items, 1 overall item, 2 qualitative questions, and 2 demographic questions. Very high internal consistency was demonstrated among the 11 core items (Cronbach's alpha: 0.94). The correlation between the overall rating and the summed 11-core item score was 0.74, providing evidence of construct validity. Face and content validity were also demonstrated. <b>Conclusion:</b> This psychometrically sound online survey, which measures the degree to which caregivers experience meaningful engagement with clinicians to fulfill their caregiver role, can be used by clinicians to identify quality improvement initiatives.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251385309"},"PeriodicalIF":1.8,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12504839/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145259332","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":"Corrigendum to \"An Assessment of Harm in Adults-Adverse Childhood Experiences Screening in Primary Care: A Survey-Based Study\".","authors":"","doi":"10.1177/23743735251358649","DOIUrl":"https://doi.org/10.1177/23743735251358649","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1177/23743735251344505.].</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251358649"},"PeriodicalIF":1.8,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12504830/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145259321","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}
Aiko Nagae, Lydia See, Alice Lu, Connie Cai Ru Gan
{"title":"Reflections on Long-Term Dental Outreach: Insights From Stakeholders in Rural Australia.","authors":"Aiko Nagae, Lydia See, Alice Lu, Connie Cai Ru Gan","doi":"10.1177/23743735251383235","DOIUrl":"10.1177/23743735251383235","url":null,"abstract":"<p><p>Regional Australians experience poorer oral health compared to urban populations, with higher rates of tooth decay and gum disease. The National Oral Health Plan 2015-2024 addresses these challenges through dental outreach programs in isolated areas. While studies have clinical outcomes, the stakeholders' experiences remain understudied. As such, this study aimed to explore stakeholders' experiences of a 17-year-long-term annual dental outreach program in a regional Australian community. A total of 35 interviews were conducted. Findings from the thematic analysis showed that this outreach has improved the community's oral health outcomes and overall well-being. There were general sentiments about the project's positive impact beyond oral health, including boosting community morale and strengthening partnerships with local practitioners. Volunteers gained new perspectives that enhanced their personal and professional growth. Findings also suggested the need for interventions directed at preventative care and integrating other health screening and promotion activities, aiming to optimise outreach opportunities to address health disparities in resource-constrained areas.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251383235"},"PeriodicalIF":1.8,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12504834/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145259327","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}
Alexandre Grant, Nicholas Goberdhan, Kristie Mar, Amanda Ramkishun, Samiha Rahman, Tyler Redublo, Isabelle Caven, Karen Okrainec
{"title":"The Need for Health Systems to Engage With and Support Youth who are Caregivers-A Lived Experience Perspective From Young Carers.","authors":"Alexandre Grant, Nicholas Goberdhan, Kristie Mar, Amanda Ramkishun, Samiha Rahman, Tyler Redublo, Isabelle Caven, Karen Okrainec","doi":"10.1177/23743735251383246","DOIUrl":"10.1177/23743735251383246","url":null,"abstract":"<p><p>Caregivers under the age of 25, or young carers, lack significant recognition and support across sectors of education, employment, and healthcare. As young carer advisors on a prior research project exploring Canadian healthcare providers' awareness of young carers in their clinical practice, we were a part of an experience-based co-design process to create a toolkit for healthcare providers to better recognize, engage with, and support young carers in clinical practice. In the following Patient Perspective, we highlight our individual experiences of interacting with the healthcare system as young carers and propose three key recommendations for healthcare systems to better value and integrate young carers. These include the need to recognize that young people can be carers, the importance of support and resources for carers and care recipients alike, and the importance of accessible and reliable primary care.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251383246"},"PeriodicalIF":1.8,"publicationDate":"2025-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12501433/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145253170","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":"Factors Influencing Patient Decisions to Discharge Against Medical Advice from Hospital Emergency: Insights From a Saudi Tertiary Hospital.","authors":"Safinaz M Alshiakh, Abdullah S Algarni","doi":"10.1177/23743735251385311","DOIUrl":"10.1177/23743735251385311","url":null,"abstract":"<p><p>Discharge against medical advice (DAMA) is a critical global issue in emergency departments (EDs), as it leads to adverse patient outcomes, higher readmission rates, and increased hospital costs. In Saudi Arabia, evidence on the underlying causes of DAMA and its impact on healthcare operations remains limited. This study aimed to identify the factors contributing to DAMA among Saudi patients and explore potential strategies for its reduction. A descriptive cross-sectional study was conducted in 2024 at our University Hospital using a convenience sampling method through a self-reported online questionnaire, with a response rate of 78%. A total of 297 participants were included, with females comprising 54.4% and males 45.5%. The most represented age group in the DAMA category was 31-42 years (39.5%). Educational backgrounds varied, with 18.9% having no formal education and another 18.9% holding a master's degree. Most participants (54.2%) received care at government hospitals, 72.4% lacked medical insurance, and 14.5% had previous DAMA incidents. The leading reasons for DAMA were financial burden (53.5%), lack of available beds (52.5%), and patient/relative fatigue (50.5%). Nationality was significantly associated with DAMA, with 30.2% of non-Saudis affected compared to 15.7% of Saudis (<i>P</i> = .038). Findings suggest that financial and systemic challenges outweigh staff-related factors, emphasizing the need for targeted interventions and policy reforms to minimize DAMA and improve patient outcomes in Saudi healthcare settings. Further longitudinal and interventional studies are recommended to evaluate the long-term impacts of DAMA and to test strategies aimed at reducing its occurrence.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251385311"},"PeriodicalIF":1.8,"publicationDate":"2025-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12501447/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145253102","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}
Andrea Carland, Nomi Weiss-Laxer, Moriah Martindale, Alexandra DiVasta, Michael Freitas, Mohammad Nadir Haider, Leslie Bisson
{"title":"Reasons for Not Enrolling in a Randomized Clinical Trial and Patient Preferences for Knee Osteoarthritis Treatment.","authors":"Andrea Carland, Nomi Weiss-Laxer, Moriah Martindale, Alexandra DiVasta, Michael Freitas, Mohammad Nadir Haider, Leslie Bisson","doi":"10.1177/23743735251383853","DOIUrl":"10.1177/23743735251383853","url":null,"abstract":"<p><p><b>Research Purpose:</b> Low enrollment in randomized control trials (RCTs) poses a threat to external validity. We conducted a secondary analysis to identify factors associated with patients' decisions to enroll in an RCT of knee osteoarthritis (KOA) treatments (injection, physical therapy, or combination). We assessed the extent to which demographic characteristics, treatment preferences, and history varied by patients' decisions to enroll. Among those who declined, we examined patterns in their treatment decisions. <b>Major Findings:</b> Among those who declined (<i>n</i> = 124), treatment history was associated with treatment decisions. Patients receiving injections had the highest BMI, patients receiving PT had the highest proportion of prior surgery, and treatment naïve patients had the highest proportion of PT referrals. Reasons for declining enrollment included strong treatment preference, unwillingness to be randomized, and logistics. Treatment preferences and treatment history appear to be associated with RCT enrollment. <b>Conclusions:</b> Findings from our secondary analysis could inform future KOA research by encouraging researchers to consider treatment preferences and randomization tolerance. We make suggestions for improvement of study enrollment, such as patient advocacy.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251383853"},"PeriodicalIF":1.8,"publicationDate":"2025-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12501443/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145253184","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":"To Achieve Zero Harm, We Must Address Financial Harm.","authors":"Tejal K Gandhi, Carole Hemmelgarn","doi":"10.1177/23743735251383264","DOIUrl":"10.1177/23743735251383264","url":null,"abstract":"<p><p>Financial harm to patients from preventable medical errors is a widespread problem that can have long-term consequences financially as well as on well-being and experience. Organizations need to develop better measurement strategies for this harm, aligned with their patient safety efforts, and implement robust mitigation strategies, such as including financial harm in root cause analysis processes and implementing Communication and Resolution Programs. In addition, the full health care system, including health systems and payers, must come together to create best practices and policies to ensure that patients are not harmed financially when experiencing medical error.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251383264"},"PeriodicalIF":1.8,"publicationDate":"2025-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12495191/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145233688","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}
Weilin Song, Maggie Hui, Monica Khitri, Alison Chu, Irena Tsui
{"title":"Caregiver Impact and Understanding of Retinopathy of Prematurity Screening.","authors":"Weilin Song, Maggie Hui, Monica Khitri, Alison Chu, Irena Tsui","doi":"10.1177/23743735251383261","DOIUrl":"10.1177/23743735251383261","url":null,"abstract":"<p><p>This research brief collected quantitative data on the impact of retinopathy of prematurity (ROP) screening, including follow-up eye care. In total, 37 survey responses from caregivers of infants who underwent ROP screening at UCLA Medical Centers between January 1, 2011 and February first, 2021 were included, and 17 (46%) of the infants had ROP. In total, 36 (98%) caregivers remembered their child undergoing ROP screening and accurately recalled why their child received the screening along with the outcome. More caregivers of children with ROP reported significant family impact from caring for their preterm child, including having to give things up [10 (59%) versus 3 (15%); <i>p</i> = .0245] and seeing family and friends less [8 (47%) versus 1 (5%); <i>p</i> = .0275]. Children with ROP were more likely to be followed by more than one eye specialist [10 (59%) versus 2 (10%); <i>p</i> = .0011] and diagnosed with additional eye conditions [4 (24%) versus 0; <i>p</i> = .0091]. Caregivers of children with ROP experienced increased long-term family impact compared to caregivers of children who were screened but did not have ROP.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251383261"},"PeriodicalIF":1.8,"publicationDate":"2025-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12495206/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145233683","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 Rural Health Model for Parkinson's Care: The Clients' Perspective.","authors":"Robert Iansek, Mary Danoudis, Melissa Ceely","doi":"10.1177/23743735251346590","DOIUrl":"10.1177/23743735251346590","url":null,"abstract":"<p><p>Access to specialist Parkinson's disease (PD) services is limited in rural Australia. This study aimed to describe patient experiences of a novel health care model for PD introduced into a rural Australian health center. The program provided specialist PD services, which included a Parkinson's specialist nurse based at the center and a metropolitan-based Parkinson's specialist neurologist who used telehealth to consult remotely with the program's patients. Patient experiences of the program were captured using the Patient-Centered Questionnaire for PD. Scores included the overall patient-centered score (OPS, range 0-3), subscale experience scores (SES, range 0-3), and quality improvement scores (QIS, range 0-9). The mean (SD) OPS for 52 participants was 1.9 (0.5), a moderate patient-centeredness experience. Most subscale experiences were rated highly, including empathy and Parkinson's expertise (mean 2.4, SD 0.6) and accessibility of health care (mean 2.3, SD 0.8). Experience of provision of tailored information was poorly rated (mean 1.3, SD 0.6). Overall, patient needs were met by this program. Trialing the program at other rural health centers is now required.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251346590"},"PeriodicalIF":1.8,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12489191/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145233664","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}