Journal of Patient Experience最新文献

Patient and Family Advisory Councils (PFACs), comprised of patients who have used the hospital's services and their family members, provide hospitals with input on a wide range of initiatives. This qualitative study aims to uncover the facilitators that accelerate and the barriers that inhibit councils and provide hospitals with a blueprint to help them start and strengthen PFACs. Grounded in partnership theory, this exploratory qualitative study used a thematic analysis framework to examine first-person accounts of launching and sustaining a PFAC. The sampling was derived from three groups of potential participants. Participants from 20 hospitals and systems agreed to discuss their councils. Five key themes emerged from the interviews: The PFAC landscape improved after the pandemic, garnering support across the organization is necessary, recruiting ideal members and diversifying the council is critical, effective PFAC operation takes planning, and process and outcome measures can identify the impact and the value of PFACs. Evidence supports patient engagement through PFAC partnerships. However, to ensure a thriving PFAC, the councils require intentional design, diverse participation representing hospital demographics, broad organizational commitment, and systematic evaluation to ensure sustainability and meaningful impact on patient experience and care delivery.

Those on transplant journeys must try to understand and navigate a complex healthcare system. Little is known about whether the challenges they face differ based on their individual characteristics. This study was done to understand the experiences of those on transplant journeys in Canada. Using an online 57-question cross-sectional survey developed in collaboration with a patient-advisory committee, data was captured on transplant patients, caregivers, and living donors (n = 935). Descriptive statistics and logistic regression analyses are reported. This article includes analyses not previously reported from this larger mixed-methods project. Most participants were female (70.1%), English speaking (92.6%), and white (87.8%). The top 3 concerns identified by participants included financial (42.6%), coordination of care (37.7%), and mental health (37.2%), which affected journey types, organ types, and sociodemographic groups differently. Understanding the perspectives of those going through transplant journeys is critical to inform system change. Further, identifying how individual characteristics influence transplant journeys is essential to person-centered care that creates a lasting impact on the organ donation and transplant system and health outcomes.

Patients living with chronic kidney disease (CKD) suffer significantly higher readmission rates after discharge than the national all-hospital 30-day rate. Federal-based programs have introduced payment models incentivizing prevention-oriented activities, like transitional care management (TCM) programs, that help patients safely transition from one care facility to their homes. In this quality improvement case study, we assessed our value-based kidney care organization's TCM clinical program, which empowers patients in their post-hospitalization journey by promoting increased awareness of their condition, adherence to medications, and care navigation, ultimately minimizing the likelihood of complications or readmission. CKD patients with moderate to high risk for readmission were included in the analysis. The findings demonstrated that enrollment in the TCM program reduced total hospital readmission rates compared to those who declined enrollment at 7-, 14-, and 30-days postdischarge (P < .01; 7-days, 42% lower; 14-days, 37% lower; 30-days, 25% lower). To reduce patient utilization and increase quality of care after a hospitalization, healthcare organizations should deploy a patient-centered transitional care approach in their care models.

Maternal mortality and morbidity do not adequately represent women's healthcare experiences. Traditional clinical outcomes must be complemented with tools that assess patients' subjective experiences to provide a comprehensive view of care effectiveness. The proposed Antenatal Patient-Reported Experience Measures (PREM) tool, developed with input from women who have experienced maternity care, highlights relevant aspects for pregnant mothers and ensures reliability and cross-cultural validation. A multiphase study conducted in 15 Indian hospitals employed purposive sampling. Phase 1 involved forming an expert group, conducting focus group discussions, establishing a standard operating procedure, and creating the PREM Questionnaire. Phases 2 and 3 included a pilot study with 220 participants and a field study with 518 respondents. A PREM tool with 22 expert-sourced questions achieved an internal consistency value of 0.7205, indicating acceptable reliability. The mean content validity index was 0.998, demonstrating high validity, and the content validity ratio was 0.95. Experts deemed 21 out of 22 questions essential. The PREM tool displayed good reliability and strong content validity. The validated PREM enhances antenatal care outcomes by prioritizing women's perspectives.

Empathy is crucial in forming a good relationship between patients and healthcare providers. Research on empathy in health care has largely focused on healthcare providers and students and less on the patient's perspective. This study's aim was to investigate patients' experience of empathy in healthcare interactions, to better understand and accommodate to patients' needs. Semi-structured interviews with patients were analyzed inspired by constructivist Grounded Theory. Three categories were formed-"I need you to focus on me," "I am more than my disease" and "I know myself and the disease" and the core category: "I want to be known as a whole human being." This study has provided a deeper insight on how empathy can be operationalized in healthcare interactions from a patient perspective. Patients experience health care interactions as dependent on empathic engagement and hampered by inequity due to knowledge hierarchies and lack of personal sharing. This study emphasizes patientś need for doctors to be more personal, and to experience a mutual sharing with their doctors to not feel vulnerable or left out in the consultation.

Active surveillance is a preferred strategy for patients with low-risk prostate cancer to delay and/or avoid side effects of treatment. While its impact on health-related quality of life (HRQOL) has been studied, factors influencing follow-up adherence and patient involvement in active surveillance protocols remain less understood. This study aimed to explore patient perspectives on testing modalities, frequencies, and satisfaction with active surveillance. HRQOL surveys and active surveillance-specific questions assessed patients undergoing active surveillance at a US academic medical center between 2019 and 2021 after Institutional Review Board approval. Respondents were invited to interviews and thematic analysis identified key themes. Forty-six participants completed surveys and 12 were interviewed. Satisfaction with active surveillance was reported by 93.3%, and 97.7% indicated a willingness to opt for the same treatment again. Anxiety and urinary function were key factors influencing quality of life. Trust in the doctor's recommendations, avoiding side effects, and feeling it is a good way to monitor their cancer were common reasons for choosing active surveillance. Addressing organizational factors, treatment equity, and evolving patient perspectives can refine active surveillance protocols. Understanding patient experiences can inform tailored protocols and improve patient-provider communication, enhancing patients' well-being and adherence.

Among 173 patients seeking musculoskeletal specialty care, we sought patient personal factors associated with patient experiences measured using the 7-item Trust and Experience with Clinicians Scale (TRECS-7) and Jefferson Scale of Patient's Perceptions of Physician Empathy (JSPPPE). Accounting for potential confounders, including demographics, visit-related information, mental health, and social health, we found no factors associated with TRECS-7, and only self-reported Hispanic/Latino ethnicity was associated with lower JSPPPE (regression coefficient = -2.8, 95% confidence interval = -4.9 to -0.63). In posthoc cluster analysis, statistical groupings of patients with generally worse mean social health and mental health were associated with worse patient experience (TRECS-7 and JSPPPE). The combination of an experience measure with lower ceiling effects and wider distribution of scores and cluster analysis may improve the ability to measure associations with patient personal factors.

The importance of effective doctor-patient communication is well established; however, rigorous evaluations of its association with patient-reported outcomes among seriously ill patients are needed. We analyzed 2 waves of survey data from adults with serious illnesses in primary care clinics. We administered the Consumer Assessment of Healthcare Providers and Systems (CAHPS^®) communication scale, Patient-Reported Outcomes Measurement and Information System (PROMIS^®) global health items, and the PROMIS-29 depression and anxiety scales. We evaluated a structural equation model to assess relationships between patient experience and self-reported global physical and mental health in 779 patients at baseline and 12 months later. Average age was 69, with 52% male, 18% Hispanic, 9% Asian, and 7% Black; 24% had a high school education or less. Better global health (PROMIS) at baseline was associated with better doctor-patient communication (CAHPS) at 12 months (β = 0.09, P = .005), and better doctor-patient communication at baseline was related to better mental health at follow-up (β = 0.07, P = .0105). The results suggest that patients' overall health may influence doctor-patient communication, and this communication may impact patients' mental health over time.

Nontuberculous mycobacterial lung disease (NTM-LD) is a chronic infection with increasing global incidence, which primarily affects individuals with preexisting lung conditions such as bronchiectasis and chronic obstructive pulmonary disease. Despite the availability of clinical guidelines and newly published Standards of Care, variability in healthcare professionals' (HCPs) familiarity with NTM-LD results in delayed diagnoses, inconsistent care, and suboptimal patient outcomes. Based on our own experiences as NTM-LD patients, we highlight key issues in the management of NTM-LD, including diagnostic inefficiencies, variable access to specialized care, mixed experience of empathy, and insufficient information provision. We provide recommendations that we hope will optimize the patient journey and improve outcomes for individuals with NTM-LD. These include improving HCP education, ensuring the involvement of a multidisciplinary team from the point of diagnosis, enhancing patient participation in decision-making, and promoting access to support networks. The challenges and solutions we propose are globally relevant and highlight the need for clear communication and integrated care pathways. A collaborative, patient-centered approach is crucial to effectively managing this complex disease in both primary and secondary care settings.

Trust in physicians is an important factor influencing patient engagement and health outcomes. While prior studies have explored the role of trust in cancer patients, there is limited research assessing trust in physicians regarding cancer-related information, including prevention, among the general population. This study aims to assess the impact of negative healthcare experiences, including poor provider communication and discrimination, on physician trust in cancer-related advice. This study utilized the Health Information National Trends Survey 6, a nationally representative survey. Binary logistic regression was performed to identify associations between covariates and trust in physicians' cancer information. Patients reporting dissatisfaction across all 7 patient-communication categories exhibited the lowest rates of trust among all covariates (aOR: 0.34, CI [0.28-0.42]). Respondents who experienced racial or ethnic discrimination in healthcare were less likely to express high trust (aOR: 0.65, CI [0.50-0.84]). Racial disparities were also identified, with non-Whites and Hispanics reporting lower levels of trust. This study highlights the significant association of negative healthcare interactions on trust in physicians' cancer-related advice and underscores the need for improved patient-centered communication.