Journal of Patient Experience最新文献

Multiple myeloma (MM) and stem cell transplantation (SCT) significantly impact patients' quality of life. Virtual reality with hypnosis (VRH) has emerged as a promising nonpharmacological intervention to address these challenges, yet data on its acceptability and user experience remain scarce. This study assessed the acceptability and user experience of a VRH intervention among adult patients with MM who had undergone allogeneic SCT. Participants used a VRH application and rated their experience through standardized questionnaires and semistructured interviews. Quantitative data were analyzed descriptively, and qualitative data underwent descriptive content analysis. Findings indicated high patients' satisfaction, strong perceived relevance, and low cybersickness. Qualitative analysis revealed perceived emotional and psychological benefits. VRH was deemed particularly suitable during hospitalization and treatment periods. This study shows the potential of combining virtual reality and hypnosis for MM patients following SCT. Indeed, they showed high satisfaction levels, paving the way for further studies evaluating the clinical efficacy of such interventions.

Physical exercise and cognitive training have the potential to enhance cognitive function and mobility in older adults at risk of dementia. However, little is known about the experience of receiving such interventions in the home settings of older adults. Fifteen participants (mean age 70.8 years) who completed the 16-week interventions of SYNERGIC@Home feasibility trial were interviewed to understand participants' engagement in home-based physical and cognitive exercise interventions delivered one-on-one through videoconferencing. Grounded theory data analysis was completed collaboratively by qualitative researchers. Results show that participants' engagement was driven by personal connection to dementia and mediated by relationships fostered largely with individual exercise trainers. Participants were also invested in the greater good (wanting their participation to make a difference to dementia research), their own outcomes, or their family's and society at large. Overall, they reflected on their participation as a rich learning experience. We propose that the quality of interpersonal connections and personalized support are of primary importance for older adults to stay engaged in physical exercise and cognitive training programs delivered remotely. SYNERGIC@Home trial registration number: NCT04997681, https://clinicaltrials.gov/study/NCT04997681.

This study evaluates the readability and quality of online resources on steroid knee injections. Online materials were identified using Google, Bing, and Yahoo with the search terms steroid knee injection, corticosteroid knee injection, and knee injection treatment. Of 150 screened web pages, 57 met inclusion criteria. Quality was assessed using the DISCERN instrument and Journal of the American Medical Association (JAMA) benchmark, while readability was measured using the Flesch-Kincaid Grade Level (FKGL) and Simple Measure of Gobbledygook (SMOG). Health On the Net Foundation Code of Conduct certification status was recorded. The mean DISCERN score was 42.47 ± 17.06, and the Journal of the American Medical Association score was 1.58 ± 1.52, indicating low quality. Readability analysis showed an FKGL score of 9.19 ± 2.08 and an SMOG score of 8.20 ± 5.23, suggesting most materials require advanced literacy. For-profit web pages had lower quality but were easier to read, whereas nonprofit and academic sites provided higher quality but more complex content. Most web pages offer low-quality, difficult-to-understand information. Patients should seek reliable sources, and oversight is needed to improve quality and accessibility.

Telehealth tools can enhance health-related information access and self-management for individuals with multiple sclerosis (MS). However, successful integration of telehealth services depends on acceptance by individuals with MS, which is influenced by their Technology Readiness Level. A 2-part questionnaire was administered: demographic information and the readiness level to use telehealth services based on the Technology Readiness Index (TRI 2.0) with 4 scales of optimism, innovativeness, insecurity, and discomfort. Data from 120 participants were analyzed using descriptive and inferential statistics. The mean readiness score was 3.266 (SD = 0.421, P < .01), optimism 3.633 (SD = 0.790, P < .01), and innovativeness 3.273 (SD = 0.699, P < .01), all significantly above the midpoint. However, insecurity (M = 3.031, SD = 0.608, P = .574) and discomfort (M = 3.127, SD = 0.773, P = .074) were not significant. No significant associations were found between readiness and demographic or disease-related factors (P > .05). Given the benefits of telehealth tools in MS care, it is crucial to implement targeted interventions to enhance readiness and engagement in telehealth adoption.

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.

Background: 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. Method: 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 (n = 8), pilot testing (n = 120), and psychometric analysis). Results: 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. Conclusion: 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.

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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.

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.