Journal of Patient Experience最新文献

Engaging youth as advisors in health research and service delivery is a rapidly growing practice, yet there are no consistent frameworks or ethical guidelines available to ensure the protection of this vulnerable population from unintended harm. This commentary aims to bring awareness to 3 ethical complexities observed in the authors' own participation within the field of youth engagement in health research and service delivery: (1) a lack of standardized safeguards for youth advisors, (2) a lack of accountability for the safety of youth advisors, and (3) the need to cater engagement activities to the development and well-being of youth. Further, recommendations for meaningfully engaging youth advisors are proposed with the aim of ensuring their safety and enabling opportunities to drive impactful outcomes in health care.

People with Parkinson's disease (PwP) often report feeling unheard or hurried through clinical visits, without the opportunity to share their unique illness story. Simultaneously, clinicians report increasing dissatisfaction with efficiency pressures that disincentivize active listening and patient-centered communication. This research brief outlines a guided short-form journaling activity, the 55-word story, for PwP to share their stories in a format that can be received by busy clinicians. Three cohorts of 10 to 13 PwP completed the program, with virtual meetings over four consecutive weeks, led by a facilitator trained in both narrative medicine and movement disorders. By the end of each cohort, nearly all (31/35 participants, 88.6%) reported an improved relationship with their neurologist, communication skills, clarity about goals and values, and/or increased community with other PwP. Further, 32/35 (91.4%) reported an intention to share their 55-word story with health providers, friends, or family. An online guided journaling activity was feasible, enjoyable, and successful at improving the well-being of PwP. This model can be used at other institutions or with other chronic illnesses.

While meaningful engagement of people living with health conditions is increasingly recognized as essential for the design of equitable and effective healthcare, research, and policy, tokenism persists across the global landscape. Despite the development and dissemination of frameworks and resolutions advocating for engagement, lived-experience contributors, as the authors of this article, still report feeling relegated to the margins of milestone meetings, signaling performative inclusion rather than genuine shared leadership. Instances of denied compensation, inferior housing accommodations, and unequal treatment further underscore a profound lack of respect and undermine any pretense of partnership. The foundational "nothing about us without us" remains absent from key global health resolutions and only deepens these concerns. This article contends that true meaningful engagement demands the embedding of nonnegotiable principles, including: substantive integration of lived experience throughout decision-making, equitable reimbursement, and resource parity. To move beyond mere symbolic gestures toward authentic partnership is not just ethical, it is essential for building trust and achieving truly people-centered systems.

I never imagined my medical training would become my lifeline, but not in the way I expected. While balancing my work as a pediatrician with raising twin daughters, I developed sudden hearing loss in my right ear, followed by tinnitus, dizziness, and pressure. Initial evaluations led to a diagnosis of Ménière's disease, an inner ear disorder that can cause progressive hearing loss and recurrent vertigo. Despite strict adherence to treatment, my condition worsened. Multiple brain scans noted a low position of the cerebellar tonsils, but this was not considered abnormal. A chance conversation eventually led to the correct diagnosis: spontaneous intracranial hypotension (SIH), a rare condition caused by cerebrospinal fluid leakage along the spine. Without the typical orthostatic headache, my presentation was unusual. Several epidural blood patches brought only temporary relief. Over the next 2 years, I traveled abroad multiple times for targeted treatments at a specialized center. This experience revealed systemic gaps, including limited awareness of SIH, lack of recognition of atypical presentations, and barriers to accessing specialized care. It reinforced my belief that early diagnosis depends on both clinical curiosity and patient advocacy.

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.