Journal of Patient Experience最新文献

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%); p = .0245] and seeing family and friends less [8 (47%) versus 1 (5%); p = .0275]. Children with ROP were more likely to be followed by more than one eye specialist [10 (59%) versus 2 (10%); p = .0011] and diagnosed with additional eye conditions [4 (24%) versus 0; p = .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.

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.

The study's objective is to describe how individuals accessing a virtual crisis stabilization program following discharge from an emergency mental health visit perceived the service as either facilitating or hindering recovery. Interested service users were identified through feedback surveys and contacted for an interview. Demographic and service utilization variables were obtained from the survey data. Interview data were analyzed thematically using an inductive approach focused on exploring perspectives related to recovery. Twenty-one participants were interviewed; one with a support person. Four recovery thematic categories were identified: (1) connection to others is possible or lacking; (2) access to care providers/therapeutic relationship; (3) ability to remain at home; and (4) virtual service provision. Each category generated subthemes that demonstrated both positive and negative impacts of the virtual service. Lived experience highlights typical aspects of crisis intervention, as well as unique themes related to the home environment and virtual care option. It is important to identify these contextual factors when determining if virtual care is right for an individual. Some areas for service improvement were also highlighted.

The journey through breast cancer treatment is often complicated and can involve major surgeries and long-term hormone-altering treatment. Research indicates that nearly 50% of women with early breast cancer experience depression, anxiety, or both in the year after diagnosis. Despite the well-documented mental health impact, access to behavioral health services during breast cancer care varies greatly based on the treatment center. My patient experience highlights missed opportunities, a lack of depression and suicide screening, behavioral health access barriers, and ultimately, the positive impact of adding mental healthcare. A trauma-informed, validating, and compassionate approach to breast cancer care with integration of behavioral health is a critical component to enhancing patient quality of life, improving treatment adherence, and reducing recurrence and mortality.

I am a 17-year-old girl and was diagnosed with venous thoracic outlet syndrome (vTOS) last year. It took 7 months and numerous visits with different doctors to receive the accurate diagnosis of vTOS, and I ultimately had a first rib resection and venogram. Reasons for the delay in my diagnosis are (1) vTOS is hard to diagnose, especially in adolescents, (2) the relation between a fever and swelling, which was later attributed to a blood clot, was overlooked, and (3) initial scans and tests were not in the right areas or were reviewed by people unfamiliar with vTOS. Raising awareness of vTOS can help pediatricians, orthopedists, and vascular surgeons diagnose and treat vTOS in earlier stages, which will help patients be treated sooner and lower the chances of permanent blockage of their vein, while also lessening the stress, fear, and frustration of a long period without a diagnosis and action plan.

Patient advocacy is essential for progress in healthcare to improve clinical practice and treatments, but advocacy is neither well understood nor supported. Advocacy work is often placed on those already negotiating social burdens, caregiving, and diagnoses. The Advocacy Exchange (TAE) rose as a community-led, public-private partnership, becoming the largest cross-cultural, cross-therapeutic, global network of health-related advocates. TAE is co-created with leaders from the nonprofit, healthcare, governmental, and business sectors as an innovative accelerator of advocacy-industry relationships, integrating patient experience into healthcare systems and supporting individuals on advocacy journeys, whether they are 3 days or 3 decades postdiagnosis. Across 4 years of online gatherings, resource sharing, and partnership-matching, TAE has reached 77,500 website visitors from 120 countries with 7100 registrants representing more than 325 organizations. Forty-five live sessions co-created with advocates show robust community participation for sessions on health equity, patient dignity, and patient voice, leading to 50-plus hours of YouTube content viewed 97,000 times with 15 million social media impressions. Survey data show an engaged community grateful for peer connections and collective problem-solving. Lessons learned can serve to accelerate public-private partnerships and amplify patient voices. Themes include: (1) individuals being forced into advocacy by need; (2) consistent presence of barriers and discrimination in healthcare; (3) importance of discussing hard subjects; (4) need for neutral meeting spaces; and (5) opportunities to bridge industries and advocacy for progress. TAE will broaden its umbrella by building more partnerships for community members, targeting access and equity in healthcare, and shaping the understanding of advocacy.

Patients hospitalized in an intensive care unit (ICU) are vulnerable to dehumanization. To provide ICU patients and their family members with more enjoyable and meaningful ICU experiences, our hospital has implemented out-of-ICU activities, including outdoor excursions and whole-body shower bathing as an early rehabilitation strategy. Herein, we investigated healthcare professionals' perceptions regarding how these out-of-ICU activities affect both the patients' physical and mental conditions and the humanized care of ICU patients. We conducted a survey that asked 17 questions (benefits, harms, "What if you or your family member were the one in the ICU?" and humanization) and provided a free-writing section. Thirty-six physicians, 38 nurses, 9 therapists, and 7 clinical engineering technicians responded (84% response rate). Most respondents perceived that the out-of-ICU program improves patients' conditions and promotes humanized care in the ICU. These preliminary findings provide valuable insights, though larger and more rigorous studies are needed to confirm and extend the results.

With artificial intelligence (AI) on the rise in healthcare, we investigated the acceptance and adoption of AI among cancer survivors who are seeking information. We searched 3 databases-PubMed, Scopus, and CINAHL for original research studies examining cancer survivors' acceptance and adoption of AI while seeking information. We screened 858 articles, resulting in the inclusion of 12 studies. Cancer survivors' perceived benefits of AI include diagnostic accuracy, improved healthcare access, and reduced healthcare costs. Concerns included the loss of human interaction, data loss, and privacy issues. Adoption and acceptance of AI-based Chatbots and cancer trial search tools were also demonstrated. Regarding the ethical use of AI, cancer survivors shared a desire for data de-identification, disclosure, and transparency. Cancer survivors accepted AI as an adjunct to physicians. Patients demonstrated acceptance and adoption of both AI-based educational tools and search engines. Developing AI models with better explainability and education can improve cancer survivors' acceptance and adoption of AI.

This pilot study evaluated the impact of a brief, animated educational video on patient understanding and satisfaction in a large urban academic emergency department (ED). A convenience sample of 23 patients viewed a 1-min 50-s video explaining triage, wait times, and ED workflows, then completed pre- and postintervention surveys. Statistically significant improvements were observed across all domains of understanding. Mean 4-point Likert scores rose from 2.48 to 3.93 (p < .0001) for understanding why patients wait, from 2.25 to 3.78 for why others may be seen first, and from 2.81 to 4.00 for overall ED processes. This intervention offers a low-cost, scalable, and staff-efficient solution to enhance communication, set expectations, and improve the overall patient experience in ED waiting rooms. These findings highlight the potential of patient-centered media to support transparency and trust in emergency care.

Pelvic inflammatory disease (PID) is often clinically associated with sexually transmitted infections, which can overshadow a broader differential diagnosis. This patient perspective explores the emotional and clinical consequences of an emergency department visit where assumptions about sexual activity delayed appropriate treatment and resulted in family conflict. As a college student from a conservative cultural background, I was disbelieved when disclosing that I had never been sexually active, and my worsening condition was attributed to denial rather than medical nuance. This piece underscores the importance of approaching patient narratives with cultural humility and avoiding premature diagnostic closure. Recommendations are made for improving history-taking, provider training, and restoring patient trust.