A Qualitative Study on the Impact and Feasibility of a Simulation-Based Program for Shared Decision-Making in Non-Small Cell Lung Cancer Care.

BACKGROUND: In the pursuit of improved clinical outcomes and patient experience in health care, shared decision-making (SDM) stands as a pivotal concept garnering increasing attention, but SDM utilization varies widely, often leading to confusion regarding team members' roles. This study explores knowledge, skills, and attitudes of oncology clinicians engaged in a pioneering educational initiative at a comprehensive cancer care center, aimed at enhancing frontline SDM capabilities. METHODS: Utilizing a prospective cohort qualitative approach, the team conducted interviews with 6 clinicians in a multidisciplinary oncology program who were engaged in an SDM continuing education program. In the program, participants were immersed in experiential learning activities including standardized didactic sessions and simulation-based SDM case role-play activities. RESULTS: Thematic analysis of interview data revealed 5 major categories: 1) perceptions of SDM; 2) training; 3) patient-centered care; 4) challenges and constraints; and 5) leadership buy-in. Participants perceived benefits, including adopting a better approach to integrate SDM into their practice, heightened engagement, emphasizing team collaboration, and embracing a patient-centric care model. CONCLUSIONS: This study underscores the transformative impact of education and training on enhancing SDM capabilities among oncology clinicians and is not intended for generalizability. By promoting a basic understanding and application of SDM principles, practicing clinicians can be better empowered to improve health care outcomes and experience. Our findings contribute to the broader endeavor of embedding practical SDM principles within clinical practice, thereby fostering a more patient-centered and effective health care environment.

A Patient-Centered Perspective on Changes in Personal Characteristics After Deep Brain Stimulation.

Importance: Deep brain stimulation (DBS) results in improvements in motor function and quality of life in patients with Parkinson disease (PD), which might impact a patient's perception of valued personal characteristics. Prior studies investigating whether DBS causes unwanted changes to oneself or one's personality have methodological limitations that should be addressed. Objective: To determine whether DBS is associated with changes in characteristics that patients with PD identify as personally meaningful. Design, Setting, and Participants: This cohort study assessed changes in visual analog scale (VAS) ratings reflecting the extent to which patients with PD manifested individually identified personal characteristics before and 6 and 12 months after DBS at a large academic medical center from February 21, 2018, to December 9, 2021. The VAS findings were tailored to reflect the top 3 individually identified personal characteristics the patient most feared losing. The VASs were scored from 0 to 10, with 0 representing the least and 10 the most extreme manifestation of the trait. Change scores were examined at the individual level. Content analysis was used to code the qualitative data. Qualitative and quantitative analyses were performed from January 12, 2019 (initial qualitative coding), to December 15, 2023. Exposure: Deep brain stimulation. Main Outcomes and Measures: The primary outcome variable was the mean VAS score for the top 3 personal characteristics. The secondary outcome was the incidence of meaningful changes on the patients' top 3 characteristics at the individual level. Results: Fifty-two of 54 dyads of patients with PD and their care partners (96.3%) were recruited from a consecutive series approved for DBS (36 patients [69.2%] were male and 45 care partners [86.5%] were female; mean [SD] age of patients, 61.98 [8.55] years). Two patients and 1 care partner were lost to follow-up. Increases in the mean VAS score (indicative of greater manifestation of [ie, positive changes in] specific characteristics) were apparent following DBS for ratings of both the patients (Wald χ2 = 16.104; P < .001) and care partners (Wald χ2 = 6.746; P < .001) over time. The slopes of the changes for both the patient and care partners were correlated, indicating agreement in observed changes over time. The individual level analyses indicated that scores for most patients and care partners remained the same or increased. Conclusions and Relevance: In this cohort study, participants reported greater (more positive) manifestations of individually identified, valued characteristics after DBS. These findings may be relevant to informing decision-making for patients with advanced PD who are considering DBS.

Positive Deviance Theory: Leveraging Compliments Data to Guide Strategic Planning for Patient Experience Improvement in a Large Rural Health Care System.

BACKGROUND: Patient-centered care (PCC) has been called for as a solution to improving care quality and patient outcomes. Patient experience, termed care experience, is a measurable aspect of PCC and aligns with coproduction. Identifying patterns of positivity and high performers is a Positive Deviance approach that can inform strategic improvement of the care experience. OBJECTIVE: To identify the characteristics of positive deviances from voluntary, unsolicited compliments from patients and family members about their care experiences. METHODS: The authors conducted a mixed-method analysis, including content and a thematic analysis of unsolicited comments from patients and families, submitted between January 2021 and January 2022. After removing duplicates and miscategorized comments, 213 compliments were included in the analysis using a single, blinded inductive coding to synthesize thematic statements. RESULTS: The main campus received the most compliments by location (89%); the most widely used patient sentiment was thankful (36.8%). Compassionate (26.8%), together with six others: competent (11.6%), communication (10.6%), cared for (8.5%), care team (8.0%), and supportive (8.0%), made up approximately 80% of drivers of care quality. Physicians (37.3%) and nurses (34.2%) were the most complimented personnel, although surgery (17.0%) were the most complimented services team. Similar characteristics were reported for exemplary individuals and their associated care teams. CONCLUSION: The results align with previously reported work by the Beryl Institute and CMS 5-star rating on key drivers of patient experience. This approach provides a method by which exemplars can be identified within health systems, and that information is used to guide improvement and organizational planning.

Assessing top quality of life measures in Acne Vulgaris studies: a crucial dimension in patient-centric care.

This study examines the origins and utilization trends of top quality-of-life (QoL) measures in acne research. A literature search on PubMed identified the Dermatology Life Quality Index (DLQI), Cardiff Acne Disability Index (CADI), and Acne Quality-of-Life Questionnaire (Acne-QoL) as the most frequently used QoL measures in studies on Acne Vulgaris. The DLQI was implemented in 142 studies it since its inception, compared to 43 utilizing CADI and 21 utilizing Acne-QoL. Despite it not being acne-specific, DLQI's usage surpassed other measures by over 50% annually since 2006. While DLQI displayed the steepest rise in utilization, usage of all measures increased significantly from 2010 to 2020. This trend underscores the growing emphasis on patient-centered outcomes in acne research, highlighting the need to incorporate both patient-reported and objective outcomes to better capture disease severity and its impact on patients' lives. For dermatologists, QoL indices can expand disease severity beyond purely objective clinical measurements.

e-Health education for patients and health professionals in the field of vascular disease.

e-Health, defined as "the use of new information and communication technologies (ICT) to improve or support health and health care," has grown in popularity over recent years as a cost-efficient, rapidly adaptable tool to deliver health care education to a wide audience. In the field of vascular disease, for which early detection and risk factor management may greatly influence patient outcomes, application of e-Health educational resources may provide innovative solutions to facilitate evidence-based and patient-centered care provision of care; to enable patients to take a more active role in the management of their long-term vascular health conditions; and to augment their preparation for, and recovery from, surgical procedures.

Days at Home After Traumatic Brain Injury: Moving Beyond Mortality to Evaluate Patient-Centered Outcomes Using Population Health Data.

BACKGROUND AND OBJECTIVES: Administrative data are invaluable for assessing outcomes at the population level. However, there are few validated patient-centered outcome measures that capture morbidity following traumatic brain injury (TBI) using these data. We sought to characterize and validate days at home (DAH) as a measure to quantify population-level outcomes after moderate to severe TBI. We additionally assessed the earliest feasible outcome assessment period for patients with TBI using this outcome measure. METHODS: This multicenter retrospective cohort study used linked health administrative data sources to identify adults with moderate to severe TBI presenting to trauma centers in Ontario, Canada, between 2009 and 2021. DAH at 180 days (DAH180 days) reflects the total number of days spent alive and at home excluding the days spent institutionalized across care settings. Construct validity was determined using hierarchical quantile regression to assess the associations between clinical and injury covariates with DAH180 days. Predictive validity was assessed using Spearman rank correlation. We estimated minimally important difference (MID) in DAH180 days to aid with outcome measure interpretability. RESULTS: There were 6,340 patients who met inclusion criteria. Median DAH180 days was 70 days (interquartile range 0-144). Mortality occurred in 2,162 (34.1%) patients within 90 days following injury. Patients in the lower DAH180 days group were more commonly older (absolute standardized difference [ASD] = 0.68) with higher preinjury health resource utilization (ASD = 0.36) and greater injury severity (ASD = 0.81). Increased baseline health resource utilization (-10.1 days, 95% CI -17.4 to -2.8, p = 0.0041), older age (-4.6 days, 95% CI -5.7 to -3.4, p < 0.001), higher cranial injury severity (-84.6 days, 95% CI -98.3 to -71.0, p < 0.001), and major extracranial injuries (-14.2 days, 95% CI -19.5 to -8.93, p < 0.001) were significantly associated with fewer DAH180 days. DAH180 days was positively correlated with DAH at up to 3 years (r = 0.91, 95% CI 0.90-0.92) and negatively correlated with direct health care expenditure (rs = -0.89, 95% CI -0.88 to -0.90). The average MID estimated from anchor-based and distribution-based methods was 18 days. DISCUSSION: We validate DAH180 days as a potentially useful outcome measure with construct, predictive, and face validity in a population with moderate to severe TBI. Given the intensity of acute care requirements for patients with TBI, our work highlights DAH180 days as a feasible and sufficiently responsive outcome measure.

A cluster randomized controlled trial to assess the impact of the 'Caring for Providers to Improve Patient Experience' (CPIPE) intervention in Kenya and Ghana: study protocol.

BACKGROUND: Poor person-centered maternal care (PCMC) contributes to high maternal mortality and morbidity, directly and indirectly, through lack of, delayed, inadequate, unnecessary, or harmful care. While evidence on poor PCMC prevalence, as well as inequities, expanded in the last decade, there is still a significant gap in evidence-based interventions to address PCMC. We describe the protocol for a trial to test the effectiveness of the "Caring for Providers to Improve Patient Experience" (CPIPE) intervention, which includes five strategies, targeting provider stress and bias as intermediate factors to improve PCMC and address inequities. METHODS: The trial will assess the effect of CPIPE on PCMC, as well as on intermediate and distal outcomes, using a two-arm cluster randomized controlled trial in 40 health facilities in Migori and Homa Bay Counties in Kenya and Upper East and Northeast Regions in Ghana. Twenty facilities in each country will be randomized to 10 intervention and 10 control sites. The primary intervention targets are all healthcare workers who provide maternal health services. The intervention impact will be assessed among healthcare workers in the study health facilities and among women who give birth in the study health facilities. The primary outcome is PCMC measured with the PCMC scale, via multiple cross-sectional surveys of mothers who gave birth in the preceding 12 weeks in study facilities at baseline (prior to the intervention), midline (6 months after intervention start), and endline (12 months post-baseline) (N = 2000 across both countries at each time point). Additionally, 400 providers in the study facilities across both countries will be followed longitudinally at baseline, midline, and endline, to assess intermediate outcomes. The trial incorporates a mixed-methods design; survey data alongside in-depth interviews (IDIs) with healthcare facility leaders, providers, and mothers to qualitatively explore factors influencing the outcomes. Finally, we will collect process and cost data to assess intervention fidelity and cost-effectiveness. DISCUSSION: This trial will be the first to rigorously assess an intervention to improve PCMC that addresses both provider stress and bias and will advance the evidence base for interventions to improve PCMC and contribute to equity in maternal and neonatal health. TRIAL REGISTRATION: ClinicalTrials.gov: NCT06085105. Protocol version and date: v2-11-07-23.

Nature as a therapeutic place and tool for enhancing service users' engagement in mental health services: A comprehensive synthesis of evidence.

This systematic review explored how nature-based care settings influence engagement in mental health therapy. We relied on Joanna Briggs Institute's guidelines for systematic reviews to synthesise data from nine articles selected from an initial pool of 649 records retrieved from PubMed, CINAHL, ScienceDirect, SocINDEX, and JBI EPB. Synthesis revealed six analytical themes: nature as a therapeutic tool, therapeutic relationships, nature's impact on power balance, nature as a safe space, risk of nature and patient-centered care. The findings shed light on the benefits while highlighting some challenges that influence participation in mental health interventions. The findings suggest that integrating nature into mental health care could be an alternative or complementary approach to enhancing patient engagement. However, the specific types of mental health care of this impact vary. Robust clinical trials that examine the effectiveness of the reported benefits are recommended. Such studies must target specific patient groups, such as the young and the elderly. Longitudinal studies that examine the long-term effects and moderating factors are needed to strengthen the evidence base and enhance patient-centered care.

Emotional Labor and the Problem of Exploitation in Roboticized Care Practices: Enriching the Framework of Care Centred Value Sensitive Design.

Care ethics has been advanced as a suitable framework for evaluating the ethical significance of assistive robotics. One of the most prominent care ethical contributions to the ethical assessment of assistive robots comes through the work of Aimee Van Wynsberghe, who has developed the Care-Centred Value-Sensitive Design framework (CCVSD) in order to incorporate care values into the design of assistive robots. Building upon the care ethics work of Joan Tronto, CCVSD has been able to highlight a number of ways in which care practices can undergo significant ethical transformations upon the introduction of assistive robots. In this paper, we too build upon the work of Tronto in an effort to enrich the CCVSD framework. Combining insights from Tronto's work with the sociological concept of emotional labor, we argue that CCVSD remains underdeveloped with respect to the impact robots may have on the emotional labor required by paid care workers. Emotional labor consists of the managing of emotions and of emotional bonding, both of which signify a demanding yet potentially fulfilling dimension of paid care work. Because of the conditions in which care labor is performed nowadays, emotional labor is also susceptible to exploitation. While CCVSD can acknowledge some manifestations of unrecognized emotional labor in care delivery, it remains limited in capturing the structural conditions that fuel this vulnerability to exploitation. We propose that the idea of privileged irresponsibility, coined by Tronto, helps to understand how the exploitation of emotional labor can be prone to happen in roboticized care practices.

Prioritizing Patient-Centered Care in a World of Increasingly Advanced Technologies and Disconnected Care.

With more treatment options in oncology lead to better outcomes and more favorable side effect profiles, patients are living longer-with higher quality of life-than ever, with a growing survivor population. As the needs of patients and providers evolve, and technology advances, cancer care is subject to change. This review explores the myriad of changes in the current oncology landscape with a focus on the patient perspective and patient-centered care.

Effect of patient-centered self-management intervention on glycemic control, self-efficacy, and self-care behaviors in South Asian adults with type 2 diabetes mellitus: A multicenter randomized controlled trial.

BACKGROUND: This study aimed to test the efficacy of patient-centered self-management intervention (PACE-SMI) to improve HbA1c, self-efficacy, and self-care behaviors in adults with type 2 diabetes mellitus (T2DM). METHODS: In this multicenter, parallel two-arm randomized controlled trial, 612 adults with T2DM and HbA1c ≥ 7% were enrolled and assigned to the control group (n = 310) and the intervention group (n = 302) using stratified permuted block randomization. The control group received usual care, whereas the intervention group received usual care plus nurse-led, theory-driven, culturally tailored PACE-SMI, comprising eight weekly sessions of individualized education, counseling, behavioral training, and home visit. Outcomes were assessed at baseline, postintervention, and 3 months follow-up. RESULTS: Data at 3 months were provided by 583 participants (control: n = 295, intervention: n = 288). Per-protocol analysis showed that the intervention group had a lower mean HbA1c (8.49% [standard deviation (SD), 1.58]) than the control group (8.74% [SD, 1.62]), with small yet statistically significant mean difference of 0.25% (95% confidence interval [CI], -0.01 to 0.51; Cohen's d = 0.16; p = 0.03). Self-efficacy and self-care behaviors significantly improved in the intervention group (116.89 [SD, 25.50] and 70.01 [SD, 17.97]) compared to the control group (75.43 [SD, 18.99] and 51.54 [SD, 12.04]), with mean differences of 41.48 (95% CI, 37.83-45.13; Cohen's d = 1.84; p < 0.0001) and 18.56 (95% CI, 16.08-21.04; Cohen's d = 1.22; p < 0.0001), respectively. Linear regression analysis indicated the effect of PACE-SMI on HbA1c was significantly mediated by improvements in self-efficacy and self-care behaviors (R2 = 0.232, p < 0.001). CONCLUSION: PACE-SMI led to modest but significant improvement in HbA1c and substantial enhancements in self-efficacy and self-care behaviors in adults with T2DM.

Clinical considerations and endocrinological implications in the detransition process.

Detransition, the process of reverting to one's gender assigned at birth after a period of transition, or moving away from the original transition goal, presents unique challenges in healthcare. This paper introduces the clinical issue and provides a comprehensive overview of the ethical, psychological, legal, surgical, and endocrinological considerations involved in supporting individuals who choose to detransition. It emphasises the importance of patient-centred care, informed consent, and the need for expanded research to address the specific needs of this population. The paper highlights the complexities of endocrine management, surgical reversals, and the necessity for comprehensive support systems. Key psychotherapeutic interventions, including trauma-focused Cognitive Behavioural Therapy (CBT), Eye Movement Desensitization and Reprocessing (EMDR), and third-wave approaches like Compassion-Focused Therapy (CFT), are recommended to manage associated trauma and shame. By adopting a holistic approach, healthcare providers can better assist individuals navigating the complexities of detransition.

Evaluating cancer patient-reported experience measures against health literacy best practices.

PURPOSE: Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care. METHODS: To assess adherence to best practice literacy principles regarding readability and understandability of commonly used cancer PREMs, three validated readability calculators and a validated instrument were utilized. To better understand how PREMs were developed, data about survey items, patient involvement, and expert consultation were collected. Finally, the Picker framework was used to evaluate the comprehensiveness of PREMs against principles of patient-centered care. RESULTS: Thirty-five PREMs studies met inclusion criteria for the study. The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, range = 8.2-11.2) with best practice recommendation being a grade 6 reading grade level. Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, range = 46-93%, with optimal score of greater than 80%). The mean number of items across PREMs was 49 (SD = 31, range = 13-136). Recommendations for the number of items to include in a questionnaire is 25-30 items. Most PREMs (n = 33, 94.3%) asked ≥ 1 double-barreled question. All PREMs addressed ≥ 2 patient-centered care principles. CONCLUSION: Cancer PREMs included in this study did not meet evidence-informed thresholds for readability and understandability. As such, it is possible that there may be gaps in how we understand the care experiences of low health literacy populations. Future development of PREMs should engage patients with low health literacy to ensure their perspectives are accurately captured and that PREMs are designed to meet the needs of all patients.

Psychometrics of the modified family-centered care assessment short version for childhood obesity.

BACKGROUND: Incorporating principles of family-centered care into pediatric weight management interventions can improve the effectiveness and quality of treatment and reduce attrition rates. To assess the family-centeredness of interventions, reliable, valid, and easy-to-administer scales are needed. The purpose of the study was to develop a shortened version of the modified Family Centered Care Assessment (mFCCA) and assess its psychometric properties. METHODS: The mFCCA, a scale to assess the family-centeredness of interventions for childhood obesity, was administered to families following the Connect for Health randomized control trial evaluating the effectiveness of a primary care-based pediatric weight management intervention. We iteratively removed items from the mFCCA and used Rasch modeling to examine the reliability and validity of the shortened scale. RESULTS: We included data from 318 parents and the exploratory factor analysis showed the presence of a single factor. The results of the Rasch modeling demonstrated acceptable internal consistency of the scale (0.7) and strong validity as evidenced by the overall model fit and range of item difficulty. Following the psychometric analyses, we reduced the number of items from 24 to 8 items. CONCLUSION: The mFCCA short version demonstrates good psychometrics and can be used to evaluate the family-centeredness of childhood obesity interventions with reduced participant burden, thereby improving outcomes for children with obesity. TRIAL REGISTRATION: Clinicaltrials.gov NCT02124460 registered on April 24, 2014.

Integrated service delivery for individuals with fetal alcohol spectrum disorder.

BACKGROUND: Individuals with fetal alcohol spectrum disorder (FASD) experience complex needs that often necessitate support from multiple systems. There is growing evidence that people with FASD may benefit from integrated service delivery (ISD), but little is known about ISD elements and processes for this population. METHOD: Using a multi-method approach involving a literature review, analysis of programme data, and staff interviews, we examined how ISD is enacted at a rural Canadian FASD centre, and identified facilitators, barriers, and potential impacts of ISD at the centre. RESULTS: We describe key elements of integrated FASD programming and identify important contextual factors and themes related to ISD barriers, facilitators, and impacts: (1) connection, (2) freedom and autonomy, (3) client-centred care, (4) learning and growth, (5) and reframing expectations. CONCLUSIONS: This study may help to inform a roadmap for enhancing FASD service delivery and guiding FASD research and policy in Canada and beyond.

Implementing and monitoring high-quality community health worker care in adult primary care at New York City Health + Hospitals.

BACKGROUND: This study describes how New York City (NYC) Health + Hospitals implemented a large-scale Community Health Worker (CHW) program in adult primary care clinics between January 2022 and December 2023 and established metrics to monitor program implementation. This study is timely as healthcare systems consider how to scale high-quality CHW programs. METHODS: We collected metrics in the following areas: (1) Workforce demographics, team structure, and training; (2) Enrolled patient demographics; (3) Patient-centered metrics, such as patient counts (e.g. patients outreached and enrolled) and engagement (e.g. median time in program, caseloads per CHW), and goals (e.g. median number of goals identified and completed). Metrics are based on standard data elements captured through CHW documentation in the electronic health record collected during program implementation. Data cleaning is completed using SQL queries and R scripts. RESULTS: In June 2023, there were a total of 97 CHW and 22 CHW Supervisor staff lines in adult primary care across 17 healthcare sites. There were 4.6 CHWs to 1 CHW supervisor on average though this ranged by facility from 1:1 to 1:6. Compared to the population that receives primary care at NYC H + H, CHWs served more African American/Black patients (40% vs. 32%) and an older patient population (35% older than 65 vs. 21% older than 65). From January 2022 to December 2023, 13,812 patients were outreached by CHWs. Of these, 9,069 (66%) were referred by clinicians, 7,331 (53%) were enrolled, and 5,044 (37%) successfully graduated. The median number of goals identified by patients was four, and the median number of goals completed with a CHW per patient was three. The top three goals were primary care engagement (47%), specialty care engagement (46%), and food insecurity (45%). CONCLUSION: Establishing clear implementation and process metrics helps to ensure that CHWs embedded in health systems can meaningfully engage adult patients in health care, address patient-centered goals, and connect patients to community and government services.

A roadmap for empowering cardiovascular disease patients: a 5P-Medicine approach and technological integration.

This article explores the multifaceted concept of cardiovascular disease (CVD) patients' empowerment, emphasizing a shift from compliance-oriented models to active patient participation. In recognizing that cardiovascular disease is a paramount global health challenge, this study illuminates the pressing need for empowering patients, underscoring their role as active participants in their healthcare journey. Grounded in 5P-Medicine principles-Predictive, Preventive, Participatory, Personalized, and Precision Medicine-the importance of empowering CVD patients through analytics, prevention, participatory decision making, and personalized treatments is highlighted. Incorporating a comprehensive overview of patient empowerment strategies, including self-management, health literacy, patient involvement, and shared decision making, the article advocates for tailored approaches aligned with individual needs, cultural contexts, and healthcare systems. Technological integration is examined to enhance patient engagement and personalized healthcare experiences. The critical role of patient-centered design in integrating digital tools for CVD management is emphasized, ensuring successful adoption and meaningful impact on healthcare outcomes. The conclusion proposes vital research questions addressing challenges and opportunities in CVD patient empowerment. These questions stress the importance of medical community research, understanding user expectations, evaluating existing technologies, defining ideal empowerment scenarios, and conducting a literature review for informed advancements. This article lays the foundation for future research, contributing to ongoing patient-centered healthcare evolution, especially in empowering individuals with a 5P-Medicine approach to cardiovascular diseases.

Patient-Centered Nursing for the Christ-Centered Nurse.

ABSTRACT: Patient-centered care (PCC), a term coined decades ago, is a key but challenging focus of nursing practice. The history, development, and current dialogue about PCC along with biblical perspectives on caregiving, wisdom, and discernment help nurses who follow Christ to offer compassionate PCC. Strategies are proposed for meaningfully engaging patients and families as active participants in healthcare. The Christian nurse can best provide consistent, effective PCC by remaining Christ-centered.