Joe's Story: How a Capitated Payment Model Lets Me Be the Physician I Want to Be.

For many years I cared for Joe, following him through diagnoses of strokes, end-stage renal disease, and metastatic prostate cancer. Gaining his trust, coordinating his care across specialist visits and hospitalizations, and helping him and his family clarify goals of care took an investment of time and relationship-building. I was able to spend this time with Joe, and all of my medically complex patients, because I had taken a job in a Program of All-Inclusive Care for the Elderly (PACE), a fully capitated model of care. With care organized around the patient instead of the visit, this payment model transformed my work life. As I reflect on the care that I provided for Joe over the years, I consider how health care organization and finance can either help or hinder our ability to provide patient-centered, coordinated, continuous care for our patients. Evolving payment models can help make space for family physicians to provide the robust primary care we are trained to deliver.

Ongoing Decline in Continuity With GPs in English General Practices: A Longitudinal Study Across the COVID-19 Pandemic.

PURPOSE: Relationship continuity of care has declined across English primary health care, with cross-sectional and longitudinal variations between general practices predicted by population and service factors. We aimed to describe cross-sectional and longitudinal variations across the COVID-19 pandemic and determine whether practice factors predicted the variations. METHODS: We conducted a longitudinal, ecological study of English general practices during 2018-2022 with continuity data, excluding practices with fewer than 750 patients or National Health Service (NHS) payments exceeding £500 per patient. Variables were derived from published data. The continuity measure was the product of weighted responses to 2 General Practice Patient Survey questions. In a multilevel mixed-effects model, the fixed effects were 11 variables' interactions with time: baseline continuity, NHS region, deprivation, location, percentage White ethnicity, list size, general practitioner and nurse numbers, contract type, NHS payments per patient, and percentage of patients seen on the same day as booking. The random effects were practices. RESULTS: Main analyses were based on 6,010 practices (out of 7,190 active practices). During 2018-2022, mean continuity in these practices declined (from 29.3% to 19.0%) and the coefficient of variation across practices increased (from 48.1% to 63.6%). Both slopes were steepest between 2021 and 2022. Practices having more general practitioners and higher percentages of patients seen the same day had slower declines. Practices having higher baseline continuity, located in certain non-London regions, and having higher percentages of White patients had faster declines. The remaining variables were not predictors. CONCLUSIONS: Variables potentially associated with greater appointment availability predicted slower declines in continuity, with worsening declines and relative variability immediately after the COVID-19 lockdown, possibly reflecting surges in demand. To achieve better levels of continuity for those seeking it, practices can increase appointment availability within appointment systems that prioritize continuity.Annals Early Access article.

The Impact of Primary Care Clinic and Family Physician Continuity on Patient Health Outcomes: A Retrospective Analysis From Alberta, Canada.

PURPOSE: Continuity of care is broadly associated with better patient health outcomes. The relative contributions of continuity with an individual physician and with a practice, however, have not generally been distinguished. This retrospective observational study examined the impact of continuity of care for patients seen at their main clinic but by different family physicians. METHODS: We analyzed linked health administrative data from 2015-2018 from Alberta, Canada to explore the association of physician and clinic continuity with rates of emergency department (ED) visits and hospitalizations across varying levels of patient complexity. Physician continuity was calculated using the known provider of care index and clinic continuity with an analogous measure. We developed zero-inflated negative binomial models to assess the association of each with all-cause ED visits and hospitalizations. RESULTS: High physician continuity was associated with lower ED use across all levels of patient complexity and with fewer hospitalizations for highly complex patients. Broadly, no (0%) clinic continuity was associated with increased use and complete (100%) clinic continuity with decreased use, with the largest effect seen for the most complex patients. Levels of clinic continuity between 1% and 50% were generally associated with slightly higher use, and levels of 51% to 99% with slightly lower use. CONCLUSIONS: The best health care outcomes (measured by ED visits and hospitalizations) are associated with consistently seeing one's own primary family physician or seeing a clinic partner when that physician is unavailable. The effect of partial clinic continuity appears complex and requires additional research. These results provide some reassurance for part-time and shared practices, and guidance for primary care workforce policy makers.

Beyond medical errors: exploring the interpersonal dynamics in physician-patient relationships linked to medico-legal complaints.

BACKGROUND: Previous research suggests that medico-legal complaints often arise from various factors influencing patient dissatisfaction, including medical errors, physician-patient relationships, communication, trust, informed consent, perceived quality of care, and continuity of care. However, these findings are not typically derived from actual patients' cases. This study aims to identify factors impacting the interpersonal dynamics between physicians and patients using real patient cases to understand how patients perceive doctor-patient relational problems that can lead to dissatisfaction and subsequent medico-legal complaints. METHODS: We conducted a retrospective study using data from closed medical regulatory authority complaint cases from the Canadian Medical Protective Association (CMPA) between January 1, 2015, and December 31, 2020. The study population included patients who experienced sepsis and survived, with complaints written by the patients themselves. A multi-stage standardized thematic analysis using Braun and Clarke's approach was employed. Two researchers independently coded the files to ensure the reliability of the identified codes and themes. RESULTS: Thematic analysis of 50 patient cases revealed four broad themes: (1) Ethics in physician's work, (2) Quality of care, (3) Communication, and (4) Healthcare system/policy impacting patient satisfaction. Key sub-themes included confidentiality, honesty, patient involvement, perceived negligence, perceived lack of concern, active engagement and empathy, transparency and clarity, informed consent, respect and demeanor, lack of resources, long wait times, and insufficient time with physicians. CONCLUSIONS: This study identifies and categorizes various factors impacting relational issues between physicians and patients, aiming to increase patient satisfaction and reduce medico-legal cases. Improving physicians' skills in areas such as communication, ethical practices, and patient involvement, as well as addressing systemic problems like long wait times, can enhance the quality of care and reduce medico-legal complaints. Additional training in communication and other skills may help promote stronger relationships between physicians and patients.

Family roles in informed consent from the perspective of young Chinese doctors: a questionnaire study.

BACKGROUND: Based on the principle of informed consent, doctors are required to fully inform patients and respect their medical decisions. In China, however, family members usually play a special role in the patient's informed consent, which creates a unique "doctor-family-patient" model of the physician-patient relationship. Our study targets young doctors to investigate the ethical dilemmas they may encounter in such a model, as well as their attitudes to the family roles in informed consent. METHODS: A questionnaire was developed including general demographic characteristics, the fulfillment of the obligation to fully inform, who will be informed, and the ethical dilemmas in decision-making. We recruited a total of 421 doctors to complete this questionnaire, of which 368 met the age requirements for this study. Cross tabulation and Pearson's chi-squared test were used to analyze the differences between types of patients for categorical variables, and a p-value < 0.05 was considered statistically significant. RESULTS: Our data shows that only 20 doctors (5.40%) stated "informing the patient alone is sufficient" when it comes to informing patients of their serious conditions. The rest of the participants would ensure that the family was informed. When facing elderly patients with decision-making capacity, the data was statistically different (3.8%; P < 0.001) The primary reason for ensuring that family members be informed differs among the participants. In addition, when family members asked doctors to conceal the patient's medical condition for the best interests of patients, 270 doctors (73.4%) would agree and cooperate with the family. A similar proportion (79.6%) would do so when it comes to elderly patients. CONCLUSIONS: (1) Chinese doctors pay extra attention to informing the patient's family, which may not be in the patient's best interests. (2) Chinese doctors treat adult (but not elderly) patients and elderly patients differently when it comes to informing family members. (3) When family members request that doctors withhold information from patients "in the best interest of the patient," the majority choose to comply with the request, although this may cause them distress.

Perceptions of COVID-19 patients in the use of bioethical principles and the physician-patient relationship: a qualitative approach.

BACKGROUND: The COVID-19 pandemic has influenced the approach to the health-disease system, raising the question about the principles of bioethics present in physician-patient relations. The principles while widely accepted may not be sufficient for a comprehensive ethical analysis. Therefore, the aim of this study was to explore the perception of these principles and the physician-patient relationship during a hospital stay through a qualitative approach. METHOD: Sixteen semi-structured interviews took place to know the patients' perception during their 2020 hospitalization for COVID-19. The data was analyzed through the constant comparison method, creating categories and comparing them. In the end, seven categories were established and were grouped in three: bioethical principles (dignity, charity, vulnerability, autonomy), doctor-patient relationship (participant commitment, informed consent, health staff-patient relationship) and the experience of the disease (illness, the role of the family). RESULTS: The research found that most patients described a positive experience, with the feeling of having been well cared for with no sense of discrimination or injustice done. The majority also reported that their autonomy was respected in the treatment decisions. The evaluation of these attitudes is an area of opportunity, especially when the patients' vulnerability is at risk. CONCLUSIONS: The ethics of virtue offers a better reflection of how human beings manifest themselves by emphasizing the development of virtuous character and behaviors that allow them to realize their values in life. Authorized by the Research Ethics Committee with registration: DI/18/105-B/3/308.

Digital Media Usage Behavior and Its Impact on the Physician-Patient Relationship: Cross-Sectional Study Among Individuals Affected by Psoriasis in Germany.

BACKGROUND: Psoriasis is a chronic skin disorder with a high burden of disease. People affected with psoriasis increasingly use the internet for health-related reasons, especially those with younger age, higher education, and higher disease severity. Despite advantages such as enhancing the individuals' knowledge with the use of digital media for health-related issues, disadvantages were also present such as quality control, and variability in the individuals' health information literacy. While patients with psoriasis within medical settings generally trust physicians over digital media, they commonly withhold their web-based research findings from health care providers. OBJECTIVE: The study aims to (1) identify further factors associated with regular psoriasis-related internet use, (2) rank specific digital media platforms used, and (3) examine digital media within the physician-patient relationship among individuals with and without dermatological treatment. METHODS: A cross-sectional, questionnaire-based study was conducted among individuals with self-reported psoriasis in Germany between September 2021 and February 2022. Participants were recruited via digital media platforms and in person at a University Hospital Department of Dermatology in southern Germany. The questionnaire asked about demographic and medical information, individual psoriasis-related digital media use, and the impact of digital media on the physician-patient relationship. Data were analyzed descriptively, and logistic regression models were performed to assess the factors associated with regular psoriasis-related internet use. RESULTS: Among 321 individuals with a median age of 53 (IQR 41-61) years (nonnormally distributed; females: 195/321), female sex, shorter disease duration, moderate mental burden of disease, and good self-assessed psoriasis-related knowledge were associated with regular psoriasis-related internet use. Of the 188 participants with a mean age of 51.2 (SD 13.9) years (normally distributed) who used digital media 106 (56.4%) usually searched for information on psoriasis-based websites and 98 (52.1%) on search engines, primarily for obtaining information about the disease and therapy options, while social media were less frequently used (49/188, 26.1%). Nearly two-thirds of internet users (125/188) claimed that their physicians did not recommend digital media platforms. About 44% (82/188) of the individuals reported to seek for additional information due to the insufficient information provided by their physician. CONCLUSIONS: This study revealed the importance of digital media in the context of psoriasis, especially among women, individuals with shorter disease duration, and moderate mental disease severity. The lack of physicians' digital media recommendations despite their patients' desire to receive such and being more involved in health-related decisions seems to be a shortcoming within the physician-patient relationships. Physicians should guide their patients on digital media by recommending platforms with evidence-based information, thereby potentially creating an adequate framework for shared decision-making. Future research should focus on strategies to prevent the spread of false information on digital media and address the needs of patients and physicians to enhance health-related digital media offerings.

Impact Analysis of COVID-19 Pandemic on Hospital Reviews on Dianping Website in Shanghai, China: Empirical Study.

BACKGROUND: In the era of the internet, individuals have increasingly accustomed themselves to gathering necessary information and expressing their opinions on public web-based platforms. The health care sector is no exception, as these comments, to a certain extent, influence people's health care decisions. During the onset of the COVID-19 pandemic, how the medical experience of Chinese patients and their evaluations of hospitals have changed remains to be studied. Therefore, we plan to collect patient medical visit data from the internet to reflect the current status of medical relationships under specific circumstances. OBJECTIVE: This study aims to explore the differences in patient comments across various stages (during, before, and after) of the COVID-19 pandemic, as well as among different types of hospitals (children's hospitals, maternity hospitals, and tumor hospitals). Additionally, by leveraging ChatGPT (OpenAI), the study categorizes the elements of negative hospital evaluations. An analysis is conducted on the acquired data, and potential solutions that could improve patient satisfaction are proposed. This study is intended to assist hospital managers in providing a better experience for patients who are seeking care amid an emergent public health crisis. METHODS: Selecting the top 50 comprehensive hospitals nationwide and the top specialized hospitals (children's hospitals, tumor hospitals, and maternity hospitals), we collected patient reviews from these hospitals on the Dianping website. Using ChatGPT, we classified the content of negative reviews. Additionally, we conducted statistical analysis using SPSS (IBM Corp) to examine the scoring and composition of negative evaluations. RESULTS: A total of 30,317 pieces of effective comment information were collected from January 1, 2018, to August 15, 2023, including 7696 pieces of negative comment information. Manual inspection results indicated that ChatGPT had an accuracy rate of 92.05%. The F1-score was 0.914. The analysis of this data revealed a significant correlation between the comments and ratings received by hospitals during the pandemic. Overall, there was a significant increase in average comment scores during the outbreak (P<.001). Furthermore, there were notable differences in the composition of negative comments among different types of hospitals (P<.001). Children's hospitals received sensitive feedback regarding waiting times and treatment effectiveness, while patients at maternity hospitals showed a greater concern for the attitude of health care providers. Patients at tumor hospitals expressed a desire for timely examinations and treatments, especially during the pandemic period. CONCLUSIONS: The COVID-19 pandemic had some association with patient comment scores. There were variations in the scores and content of comments among different types of specialized hospitals. Using ChatGPT to analyze patient comment content represents an innovative approach for statistically assessing factors contributing to patient dissatisfaction. The findings of this study could provide valuable insights for hospital administrators to foster more harmonious physician-patient relationships and enhance hospital performance during public health emergencies.

The Role of Primary Care in Improving Population Health.

Policy Points Systems based on primary care have better population health, health equity, and health care quality, and lower health care expenditure. Primary care can be a boundary-spanning force to integrate and personalize the many factors from which population health emerges. Equitably advancing population health requires understanding and supporting the complexly interacting mechanisms by which primary care influences health, equity, and health costs.

Confidence in treatment is contributing to quality of life in autoimmune liver diseases. The results of ERN RARE-LIVER online survey.

BACKGROUND AND AIMS: Autoimmune liver diseases (AILDs) are associated with impaired health-related quality of life (HrQoL). The aim of this project was to identify potentially modifiable factors related to HrQoL in a large transnational cohort of patients with AILDs. METHODS: A cross-sectional online survey was conducted on patients with autoimmune hepatitis (AIH), primary biliary cholangitis (PBC) or primary sclerosing cholangitis from 15 European countries. HrQoL was measured with EQ-5D-5L and EQ visual analogue scale (EQ-VAS) and analysed in relation to demographic, psychosocial, disease- and treatment-related factors. A Patient Health Questionnaire-2 score >3 indicated relevant depression. Multivariable linear regression analyses were used to identify potentially modifiable factors associated with HrQoL and confidence in treatment whilst adjusting for known confounders. RESULTS: A group of 1178 European patients (79% female, mean age 48 ± 14 years) participated in the study. HrQoL was impaired in all three diseases (mean EQ-5D-5L = 0.75, mean EQ VAS = 68.9), most markedly in PBC (mean EQ-5D-5L = 0.73, mean EQ-VAS = 66.2). Relevant depression, which was detected in 17% of patients, was prominently associated with impaired HrQoL. In the regression analysis, treatment confidence was identified as an important modifiable factor positively contributing to HrQoL. This influence was observable even after adjusting for other covariates including depression. Management in a transplant centre, treatment with azathioprine in AIH, and with ursodeoxycholic acid in PBC, was associated with increased treatment confidence. Finally, improved patient-physician relationships contributed to treatment confidence. CONCLUSION: Treatment confidence is a relevant modifiable determinant of HrQoL and should be further investigated to improve the standards of care for patients with AILDs.

How Can You Mend a Broken Heart?

Being a resident is hard. Being a resident dealing with a recent breakup is even harder. I wrote this piece after a serendipitous encounter on Valentine's Day with an elderly woman who embraced her messy journey to finding love, no matter her age or circumstance. We learn a lot from our patients: from their bodies, physiologies, and illnesses, we learn to become stronger clinicians; from their stories, traumas, and emotions, we learn to become more full, well-rounded humans. Looking back, I think about how easily I almost missed this heartfelt connection by being absorbed in my usual checklist of tasks for a new hospital admission. My patient's keen insight into her own romantic life taught me a vital skill in both medicine and personal relationships: the importance of being open to the unexpected.Annals "Online First" article.

Burdens of disease and caregiver burden in complex vascular malformations.

INTRODUCTION: Vascular malformations (VMs) are rare diseases that affect a wide age range of patients and require complicated care and management. The strain these conditions put on patients and their caretakers is not well understood. This study aims to characterize those burdens in young adult patients and parents of patients with VMs to improve communication, health-related quality of life, and caregiver burden. METHODS: We performed semi-structured interviews with patients and parents of patients with VMs. Interviews were conducted via telephone or video-call software, recorded, and transcribed. The transcriptions were analyzed to identify burden themes through multiple rounds of codebook development and refinement. The final codebook was applied to all interviews. RESULTS: Twenty-five young adult patients and 34 parent interviews were performed and led to the identification of four primary themes of disease burden that showed up in almost every interview: burdens of the disease process, logistical and financial burdens, psychological and emotional burdens, and social burdens. Persistent uncertainty was prominent and exacerbated all other burdens as well. DISCUSSION: We found that patients and parents struggle with burdens in a wider breadth of life experiences than have been previously characterized in the literature. They feel stressors of isolation, struggles with their identity, and even traumatic experiences from prior medical encounters. It is critical for providers of these patients and families to be aware of the burdens that they face outside of the immediate medical context. Acknowledging and providing space to address these burdens has the potential to greatly improve therapeutic relationships.

Communication with parents and young adult patients affected by complex vascular malformations.

BACKGROUND: Vascular malformations (VMs) are rare disorders that can cause pain, coagulopathy, disfigurement, asymmetric growth, and disability. Families affected by complex VMs experience misdiagnosis, limited trustworthy information, delayed or inappropriate treatments, and persistent uncertainty. However, more research is needed to understand the communication experiences of these families during clinical encounters. PROCEDURE: We performed semi-structured interviews with 34 parents of children with VMs (18% men; 82% women; mean age = 41 years) and 25 young adults with VMs (8% men; 88% women; 4% nonbinary; mean age = 29) living in the United States, recruited through four patient advocacy groups. We performed thematic analysis to assess communication experiences, using a previously developed functional model of communication in pediatric oncology as an a priori framework. RESULTS: We identified evidence of eight communication functions previously identified in pediatric oncology: building relationships, exchanging information, enabling self-management, managing uncertainty, responding to emotions, making decisions, providing validation, and supporting hope. Uncertainty was pervasive through participants' experiences and seemed to influence the fulfillment of communication functions. Fewer participants seemed to highlight the role of clinicians in responding to emotions or supporting hope, compared to other communication functions. CONCLUSION: Interviews with parents and young adult patients with VMs provided evidence for eight functions of communication. While exchanging information and building relationships were described by nearly every respondent, supporting hope and responding to emotions were mentioned less frequently. Future studies should develop patient-reported communication measures to quantify the fulfillment of these functions and to identify areas of communication in need of intervention.

Disagreement between patients' and general practitioners' estimates of patient health literacy increases from the top to the bottom of the social ladder: a cross-sectional study in the Paris area.

BACKGROUND: Associated with both socioeconomic position and health outcomes, health literacy (HL) may be a mechanism contributing to social disparities. However, it is often difficult for general practitioners (GPs) to assess their patients' HL level. OBJECTIVE: To analyse disagreements about patient HL between GPs and their patients according to the patient's socioeconomic position. METHODS: For each of the 15 participating GPs (from the Paris-Saclay University network), every adult consulting at the practice on a single day was recruited. Patients completed the European HL Survey questionnaire and provided socio-demographic information. For each patient, doctors answered 4 questions from the HL questionnaire with their opinion of the patient's HL. The doctor-patient disagreement about each patient's HL was analysed with mixed logistic models to study its associations with patients' occupational, educational, and financial characteristics. RESULTS: The analysis covered the 292 patients (88.2% of the 331 included patients) for whom both patients and GPs responded. The overall disagreement was 23.9%. In all, 71.8% of patients estimated their own HL as higher than their doctors did, and the gap between doctors' answers and those of their patients widened from the top to the bottom of the social ladder. The odd ratio for the 'synthetic disagreement' variable for workers versus managers was 3.48 (95% CI: 1.46-8.26). CONCLUSIONS: The lower the patient's place on the social ladder, the greater the gap between the patient's and doctor's opinion of the patient's HL. This greater gap may contribute to the reproduction or maintenance of social disparities in care and health.

Cervical cancer (over-)screening in Europe: Balancing organised and opportunistic programmes.

AIMS: Cervical cancer (CC) over-screening has been understudied in Europe, yet is relevant for approaching inequalities in screening uptake. Focusing on countries' screening strategies (opportunistic systems versus organised programmes), we assess in which contexts CC over-screening is more prevalent, and which women are more likely to have engaged in cervical cancer screening (CCS) within the past year. METHODS: A two-level (multilevel) design among screening women (N = 80,761) nested in 31 European countries was used to analyse data from the second wave (2013-2015) of the European Health Interview Survey. We focused on over-screening, defined as screening more frequently than the three-yearly screening interval prescribed in the European guidelines - that is, having screened within the past year. RESULTS: Higher levels of over-screening were observed in opportunistic systems compared to systems with organised programmes. In opportunistic systems, women with a higher socioeconomic position had a higher likelihood of being screened within the past year than their socioeconomic counterparts. Moreover, these differences diminished under organised programmes. CONCLUSIONS: Contexts with organised CCS programmes are more efficiently reducing over-screening, and enforcing the European guidelines. We suggest that the physician-patient relationship is an essential pathway for explaining socioeconomic differences in CC (over-)screening and for future interventions.

Physician-patient boundaries in palliative care.

BACKGROUND: Nurturing effective physician-patient relationships is essential to the provision of patient-centred care. Palliative care physicians may apply boundary-crossings or breaches in professional standards to nurture effective physician-patient relationships. Being highly individualized and shaped by the physician's narratives, clinical experience, and contextual considerations, boundary-crossings are susceptible to ethical and professional violations. To better appreciate this concept, we employ the Ring Theory of Personhood (RToP) to map the effects of boundary-crossings on the physician's belief systems. METHODS: As part of the Tool Design SEBA methodology, a Systematic Evidence-Based Approach (SEBA) guided systematic scoping review was employed to guide the design of a semi-structured interview questionnaire with palliative care physicians. The transcripts were simultaneously content and thematically analysed. The themes and categories identified were combined using the Jigsaw Perspective and the resulting domains formed the basis for the discussion. RESULTS: The domains identified from the 12 semi-structured interviews were catalysts and boundary-crossings. Boundary-crossings attempt to address threats to a physician's belief systems (catalysts) and are highly individualized. Employ of boundary-crossings depend on the physician's sensitivity to these 'catalysts', their judgement and willingness to act, and their ability to balance various considerations and reflect on their actions and their ramifications. These experiences reshape belief systems, understandings of boundary-crossings and may influence decision-making and practice, underscoring the potential for greater professional breaches when unchecked. CONCLUSION: Underlining its longitudinal effects, the Krishna Model underscores the importance of longitudinal support, assessment and oversight of palliative care physicians, and lays the foundation for a RToP-based tool to be employed within portfolios.

'Never once was I thinking the c-word': Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis.

AIMS AND OBJECTIVES: To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. BACKGROUND: It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. DESIGN: An inductive qualitative inquiry. METHODS: In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. RESULTS: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. CONCLUSION: Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. RELEVANCE TO CLINICAL PRACTICE: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships. PARTICIPANT CONTRIBUTION: Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.

To know or not to know? Opinions of patients with Parkinson's Disease on disclosing risk of phenoconversion in RBD.

INTRODUCTION: The aim of our study was to find out the opinion of patients with Parkinson's Disease (PD) whose disease was preceded by REM sleep behaviour disorder (RBD) regarding early information about the high risk of phenoconversion in RBD. CLINICAL RATIONALE FOR THE STUDY: RBD is an early clinical manifestation of α-synucleinopathies with a more than 90% risk of phenoconversion to PD, dementia with Lewy bodies (DLB) or multiple system atrophy (MSA). It remains a subject for debate as to whether and how RBD patients should be informed about the high risk of phenoconversion. The patient's right to full knowledge regarding his or her health conflicts with the potentially destructive impact of this information on his or her mental state and quality of life of them and their relatives. MATERIAL AND METHODS: Thirty-nine patients with PD whose disease was preceded by RBD were surveyed. Data on the course of RBD and PD was collected. Questions were asked about early information about the high risk of phenoconversion to patients with RBD and factors determining the opinion of the surveyed persons. RESULTS: The majority ( > 60%) of respondents gave a positive answer when asked whether patients should be informed about their high risk of developing PD once diagnosed with RBD. Only a few (7.7%) respondents believed that disclosing such information to the patient should be possible only after obtaining his or her consent. Respondents associated consent to information about the high risk of developing PD in people with RBD with high expectations of the healthcare system. We were unable to determine whether factors such as the gender of the subject, the clinical course of the PD, and the RBD duration had an impact on patients' opinions regarding disclosing knowledge about phenoconversion. CONCLUSIONS AND CLINICAL IMPLICATIONS: Our study provides important information that should influence physicians' communication with patients with RBD, especially regarding how they communicate about the high risk of phenoconversion.

Understanding Women's Communication with Their Providers During Medication Abortion and Abortion Pill Reversal: An Exploratory Analysis.

Introduction/Objective: Medication abortion is a common experience for women in the United States, now totaling over 50% of all abortions. The purpose of this exploratory analysis is to understand women's medication abortion and abortion pill reversal decision-making experiences, with a particular focus on their communication with their medical providers. Methods: We surveyed women who contacted Heartbeat International to inquire about abortion pill reversal. Eligible women had to complete a minimum of the 2-week progesterone protocol in order to answer the questions on the electronic survey about their medication abortion and abortion pill reversal decisions. We assessed decision difficulty using a Likert scale and provider communication using the Questionnaire on the Quality of Physician-Patient (QQPPI) and analyzed women's narratives about their experiences using thematic analysis. Results: Thirty-three respondents met the eligibility criteria and filled out the QQPPI and decision-difficulty scales. Using the QQPPI scale, women scored their communication with their APR providers as significantly better than their communication with their abortion providers (p < 0.0001). Women reported that choosing medication abortion was significantly more difficult than choosing abortion pill reversal (p < 0.0001). White women, women with college degrees, and women who were not in a relationship with the father of the child reported more difficulty in choosing APR. Conclusion: As the number of women who contact the national hotline to inquire about abortion pill reversal increases, the need to understand the experiences of this growing population of women becomes more salient. This need is particularly important for health care providers who prescribe medication abortion and abortion pill reversal. The quality of the physician-patient interaction is essential to providing effective medical care to pregnant women.

The Relationship Between the Physician-Patient Relationship, Physician Empathy, and Patient Trust.

BACKGROUND: A trusting physician-patient relationship is an essential component of high-quality care. OBJECTIVE: To explore the relationship between the physician-patient relationship, physician empathy, and patient trust. DESIGN: Cross-sectional survey. PARTICIPANTS: A total of 3289 patients (response rate 68.6%) from 103 hospitals in eastern, central, and western China completed surveys. MAIN MEASURE: Physician empathy, patient trust, and physician-patient relationship were measured by the Chinese version of Consultation and Relational Empathy Scale, Wake Forest Physician Trust Scale, and Patient-Doctor Relationship Questionnaire, respectively. Bootstrapped mediation analysis was performed. KEY RESULTS: There were moderate to strong correlations between physician empathy, patient overall trust, and patient trust in physician's benevolence and competence, and the physician-patient relationship (r = 0.49-0.75, P < 0.01 for all). Patients' evaluation of physician-patient relationship was predicted by their perception of physician empathy, patient overall trust, and trust in the physician's benevolence. Mediation analysis showed that the indirect effect of physician empathy on physician-patient relationship through patient overall trust was significant (ß = 0.18, 95% CI: 0.15-0.21) and that the mediation effect of patient trust in physician's benevolence was significant (ß = 0.24, 95% CI: 0.20-0.28), though the mediation effect of patient trust in physician's competence was not (ß = 0.01, 95% CI: -0.02 to 0.02). CONCLUSIONS: Patients' perception of physician empathy influences their evaluation of the physician-patient relationship both directly and indirectly via patient trust in the physician's benevolence. These findings underline the importance of patient belief in physician benevolence and empathy in building trustful and harmonious relationships between physicians and patients.