Journal of Patient Experience最新文献

The increasing reliance on the Internet for health information has raised concerns about patients using unreliable and potentially harmful content. This study aimed to establish quality criteria to assist patients, caregivers, and the public in evaluating the reliability of online health information. We conducted focus group workshops with 25 participants recruited across Canada, proficient in either English or French. The participants included 13 females and 12 males, with the majority having a college or higher level of education. Through an in-depth analysis comparing various aspects, the participants determined 6 quality criteria: authorship, reliability, usefulness, accessibility, readability, and privacy & confidentiality. The findings from this study present a comprehensive list of quality criteria that will contribute to developing evidence-based quality benchmarks and policy frameworks in multiple languages. These criteria are not only valid but also well-suited to the diverse needs and preferences of patients and the public, providing a reliable framework for evaluating online health information through an evidence-based approach.

Patient-centered care is a salient value expressed by stakeholders, but a commitment to implementing patient-centered care environments lags in the context of inpatient psychiatry. The current study aimed to describe patients' suggestions for improving the quality of inpatient psychiatry. We fielded a national survey online in 2021, in which we asked participants to report their recommendations for care improvement through a free-response box. We used an inductive qualitative approach to synthesize responses into themes. Most responses described negative experiences, with suggested improvements implied as the inverse or absence of the respondent's negative experience. Among 510 participants, we identified 10 themes: personalized care, empathetic connection, communication, whole health approach, humane care, physical safety, respecting patients' rights and autonomy, structural environment, equitable treatment, and continuity of care and systems. To implement the value of patient-centered care, we suggest that those in positions of power prioritize improvement initiatives around these aspects of care that patients find most in need of improvement.

The Diabetes Self-Management Education and Support (DSMES) program provides education and medical monitoring of diabetes to Veterans through the Virtual Medical Center (VMC). Qualitative interviews were conducted with 15 key stakeholders (4-DSMES VMC trainers, 5-clinical faculty, and 6-Veterans) from across Ohio urban and rural populations for up to 1h about their experiences using the program and suggestions for improvement. All the Veterans interviewed were able to access care within the DSMES VMC and reported a positive experience using the program, and improved diabetes self-management. Other stakeholders suggested more administrative and technical support for the DSMES VMC to increase awareness for VA staff and Veterans of the program to improve recruitment, and to shift to a web-based platform that is more easily accessible by clicking a link to reduce technical issues with downloading the program. These findings can inform future implementation efforts using technology to increase access to care allowing better health education for Veterans.

The day after a holiday, our medically complex son, who was acutely ill, needed care at the local children's hospital. Once in the emergency room (ER), he was triaged to a trauma room. Without our knowledge or consent, a chaplain entered the crowded and chaotic room. Although pleasant, the chaplain was not a person who comforted us. Her presence (1) increased our anxiety to panic level, (2) took our attention away from our acutely ill son to worst-case scenarios, (3) made us extremely uncomfortable, and (4) was counterproductive. We strongly feel that the patient/family should be asked if they want a chaplain or other spiritual/support person to enter the room.

When the consultation is predominantly verbal, existing research in clinician-patient communication indicates that many patients struggle to understand and recall medical consultations or may not understand the extent of their illness or the purpose of their treatment plan. When the clinician-patient discussion centers around the risk of a repeated cardiovascular disease (CVD) related event, qualitatively assessing what factors affect the communication of this risk may guide the creation of effective communication solutions. Semi-structured interviews were conducted with 17 clinicians treating patients at stages along the cardiac rehabilitation patients' journey. Thematic analysis identified factors that prevent patients from understanding the risk they face of experiencing a repeated cardiac event. Results indicate a clearer understanding of the cardiac rehabilitation patient journey by means of a patient journey map; an overview of how CVD risk is currently communicated; and the factors that affect communication of these risks in the form of themes and sub-themes. Findings shape the proposal of an evidence informed model of opportunities for enhanced digital media supported communication in cardiac rehabilitation.

Many individuals with type 1 diabetes (T1D) do not achieve their management goals. The patient perspective on unmet needs in T1D may guide the role of adjunctive therapies, including glucagon like peptide-1 receptor agonists (GLP-1RAs). A quantitative online survey (n = 133) assessed (1) self-reported demographic and management data, (2) management priorities, satisfaction, and willingness to use adjunctive therapies and (3) conducted a risk-benefit analysis using three masked drug profiles (1.8 mg vs 0.6 mg liraglutide vs placebo). A subgroup of respondents (n = 20) participated in semi-structured interviews to extend upon survey insights. Needs were unmet by current treatment in 28% of surveyed individuals. The greatest unmet needs included (1) glycemia, (2) management-related fatigue, and (3) weight management. Most respondents (94%) indicated that they would use adjunctive therapies. The preferred administration route was daily tablets (66%) followed by weekly injections (32%). Metabolic improvements were most valued (reduction in hypoglycemia, hyperglycemia). Most respondents (94%) preferred the liraglutide risk-benefit profile (1.8 mg, then 0.6 mg) over placebo. Individuals with T1D self-report many unmet needs. While not currently approved in T1D, GLP-1RA properties align with many management priorities reported by individuals with T1D.

Adolescent and young adult (AYA) cancer patients receive palliative medicine consultation at a late stage and face diagnostic delays. Failure to address social determinants of health (SDOH) and AYA-specific needs can adversely impact patient experience. This retrospective observational cohort study used data from chart review to assess the frequency of SDOH impacting AYA patients and setting of initial diagnosis at a US urban safety-net hospital. The association of SDOH variables with delays in treatment, loss of follow-up, and no-shows was tested using Chi-square and t-tests. One hundred seventy five patient charts were reviewed. Sixty-two percent were diagnosed in acute care settings. Substance use disorders, financial, employment, and insurance issues were associated with delayed treatment, with weak to moderate effect sizes. Mental health diagnoses, substance use disorder, homelessness, and financial burdens were associated with patient no-shows, with moderate to large effect sizes. Twenty-five percent of patients received palliative medicine consultation; 70% of these occurred at end of life. This study demonstrates the impact of SDOH on AYA cancer care and the need for policy allowing for intervention on SDOH.

The SARS-CoV-2 (COVID-19) pandemic introduced many challenges and nuances that have transformed medical practice and research. The uncertainty caused by COVID-19 led to inevitable challenges to patient-provider relationships. The ever-changing landscape of COVID-19 research and policy proved to be challenging for the medical community and patients. These challenges also exacerbated long-standing issues regarding patient-provider communication and trust. On the other hand, these challenges gave voice to a burgeoning patient advocacy community. Through social media, advocacy and patient organizing, patients harnessed their power and organized over challenges relating to COVID-19 fears and concerns, ramifications of "Long COVID," and much more. During this unprecedented pandemic, there was a realization that the science and research surrounding COVID-19 is evolving and that there may be a benefit to embracing the dynamic nature of research and the scientific process. We propose that providers and the medical community should consider epistemological humility, which acknowledges insufficiencies related to the state of medical knowledge with a sense of understanding and respect for not having all of the answers. We argue that there is untapped potential in saying, "We don't know" and explaining why. There is an implicit culture that providers should be responsible for knowing everything and solving every problem. Epistemological humility challenges this culture, and inherently gives credence and voice to patient perspectives. We assert that epistemological humility is necessity when addressing contemporary health challenges such as COVID-19.

The demand for digital platforms in managing heart failure (HF) is expected to increase with promising effects on readmission and health expenditure. The study aims to explore current post-discharge management strategies and identify the need and acceptance of digital platforms, to ensure the development of a user-friendly mobile application for HF patients. Using a cross-sectional analytical research design, 90 consecutive patients diagnosed with HF who were discharged from a Tertiary Care Center were enrolled. Tele-interview was conducted using a self-developed and validated tool. The mean age of participants was 55.54 ± 10.33 years. The participants' adherence to HF management strategies was low in terms of physical exercise and weight monitoring. More than one-third were willing to self-record their measurements and use a mobile application. The common mobile application features requested were medication information/reminder (88.6%), health education (84.3%), chat with nurses (84.3%), physical activity (81.4%), symptoms (78.6%), diet (78.6%) and weight management (72.9%). The findings from this initial phase of mobile development are expected to help leverage better development of digital interventions for HF patients.

Understanding differences in how demographic groups experience telehealth may be relevant in addressing potential disparities in telehealth usage. We seek to identify and examine themes most pertinent to patients' negative telehealth experiences by age and race in order to inform interventions to improve patients' future telehealth experiences. We performed a content analysis of Press Ganey patient experience surveys from adult patients at 17 primary care sites of a large, public healthcare system with visits from April 30, 2020 to August 27, 2021. We used sentiment analysis to identify negative comments. We coded for content themes and analyzed their frequency, stratifying by age and race. We analyzed 745 negative comments. Most frequent themes differed by demographic categories, but overall, the most commonly applied codes were "Contacting the Clinic" (n = 97), "Connectivity" (n = 84), and "Webside Manner" (n = 79). The top three codes accounted for >40% of the negative codes in each race category and >35% of the negative codes in each age category. While there were common negative experiences among groups, patients of different demographics highlighted different aspects of their telehealth experiences for potential improvement.