Patient-reported outcome and experience domains for diagnostic excellence: a scoping review to inform future measure development.

PURPOSE: "Diagnostic excellence," as a relatively new construct centered on the diagnostic process and its health-related outcomes, can be refined by patient reporting and its measurement. We aimed to explore the scope of patient-reported outcome (PRO) and patient-reported experience (PRE) domains that are diagnostically relevant, regardless of the future diagnosed condition, and to review the state of measurement of these patient-reported domains. METHODS: We conducted an exploratory analysis to identify these domains by employing a scoping review supplemented with internal expert consultations, 24-member international expert convening, additional environmental scans, and the validation of the domains' diagnostic relevance via mapping these onto patient diagnostic journeys. We created a narrative bibliography of the domains illustrating them with existing measurement examples. RESULTS: We identified 41 diagnostically relevant PRO and PRE domains. We classified 10 domains as PRO, 28 as PRE, and three as mixed PRO/PRE. Among these domains, 19 were captured in existing instruments, and 20 were captured only in qualitative studies. Two domains were conceptualized during this exploratory analysis with no examples identified of capturing these domains. For 27 domains, patients and care partners report on a specific encounter; for 14 domains, reporting relates to an entire diagnostic journey over time, which presents particular measurement opportunities and challenges. CONCLUSION: The multitude of PRO and PRE domains, if measured rigorously, would allow the diagnostic excellence construct to evolve further and in a manner that is patient-centered, prospectively focused, and concentrates on effectiveness and efficiency of diagnostic care on patients' well-being.

Patient Reasoning: Patients' and Care Partners' Perceptions of Diagnostic Accuracy in Emergency Care.

OBJECTIVES: In the context of validating a measure of patient report specific to diagnostic accuracy in emergency department or urgent care, this study investigates patients' and care partners' perceptions of diagnoses as accurate and explores variations in how they reason while they assess accuracy. METHODS: In February 2022, we surveyed a national panel of adults who had an emergency department or urgent care visit in the past month to test a patient-reported measure. As part of the survey validation, we asked for free-text responses about why the respondents indicated their (dis)agreement with 2 statements comprising patient-reported diagnostic accuracy: 1) the explanation they received of the health problem was true and 2) the explanation described what to expect of the health problem. Those paired free-text responses were qualitatively analyzed according to themes created inductively. RESULTS: A total of 1,116 patients and care partners provided 982 responses coded into 10 themes, which were further grouped into 3 reasoning types. Almost one-third (32%) of respondents used only corroborative reasoning in assessing the accuracy of the health problem explanation (alignment of the explanation with either test results, patients' subsequent health trajectory, their medical knowledge, symptoms, or another doctor's opinion), 26% used only perception-based reasoning (perceptions of diagnostic process, uncertainty around the explanation received, or clinical team's attitudes), and 27% used both types of reasoning. The remaining 15% used general beliefs or nonexplicated logic (used only about accurate diagnoses) and combinations of general reasoning with perception-based and corroborative. CONCLUSIONS: Patients and care partners used multifaceted reasoning in their assessment of diagnostic accuracy. IMPLICATIONS: As health care shifts toward meaningful diagnostic co-production and shared decision making, in-depth understanding of variations in patient reasoning and mental models informs use in clinical practice. HIGHLIGHTS: An analysis of 982 responses examined how patients and care partners reason about the accuracy of diagnoses they received in emergency or urgent care.In reasoning, people used their perception of the process and whether the diagnosis matched other factual information they have.We introduce "patient reasoning" in the diagnostic measurement context as an area of further research to inform diagnostic shared decision making and co-production of health.

Achieving Diagnostic Excellence: Roadmaps to Develop and Use Patient-Reported Measures With an Equity Lens.

BACKGROUND: Diagnostic excellence refers to the optimal process to attain an accurate and precise explanation about a patient's condition and incorporates the perspectives of patients and their care partners. Patient-reported measures (PRMs), designed to capture patient-reported information, have potential to contribute to achieving diagnostic excellence. We aimed to craft a set of roadmaps illustrating goals and guiding the development of PRMs for diagnostic excellence ("Roadmaps"). METHODS: We used iterative inputs from environmental literature scans, expert consultations, and patient voice and employed human-centred design (HCD) and equity-focused road-mapping. The culminating activity of these approaches was an Expert Convening. RESULTS: Use of PRMs can achieve multiple goals for diagnostic excellence, including but not limited to: (1) PRMs for diagnostic continuity, (2) diagnostic PRM alerts, (3) PRM-based quality improvement, (4) PRMs for research, (5) PRMs for routine screening, (6) PRM-based diagnostic excellence population-level patterns, and (7) PRMs supporting patient storytelling. Equity is considered as a cross-cutting goal. Altogether these and future goals support operationalising a vision of patient-reported diagnostic excellence. Roadmaps were developed as a dynamic tool to illustrate PRMs in relation to specific steps with feedback loops to accomplish goals, anticipated timeframes (8-15 years), synergies to foster, and challenges to overcome. Roadmaps are practical in their following PRMs through the stages of development, endorsement, implementation and scaling, and acting upon those measures. Timeframe estimates assume immediate transitions between these stages and no acceleration through incentives and active coordination. CONCLUSION: PRMs for diagnostic excellence have potential to connect patient perspectives, equity, and achievable goals. Roadmaps offer a design approach to enable coordinating measurement activities among diverse stakeholders. Roadmaps also highlight versatility in ways patient-reported information can be collected and used, from clinical settings to public health contexts. Patient-reported diagnostic excellence cannot be established as a solely top-down endeavour, but inherently benefits from bottom-up approaches.

Does nurse use of a standardized flowsheet to document communication with advanced providers provide a mechanism to detect pulse oximetry failures? A retrospective study of electronic health record data.

BACKGROUND: Pulse oximetry guides clinical decisions, yet does not uniformly identify hypoxemia. We hypothesized that nursing documentation of notifying providers, facilitated by a standardized flowsheet for documenting communication to providers (physicians, nurse practitioners, and physician assistants), may increase when hypoxemia is present, but undetected by the pulse oximeter, in events termed "occult hypoxemia." OBJECTIVE: To compare nurse documentation of provider notification in the 4 h preceding cases of occult hypoxemia, normal oxygenation, and evident hypoxemia confirmed by an arterial blood gas reading. METHODS: We conducted a retrospective study using electronic health record data from patients with COVID-19 at five hospitals in a healthcare system with paired SpO2 and SaO2 readings (measurements within 10 min of oxygen saturation levels in arterial blood, SaO2, and by pulse oximetry, SpO2). We applied multivariate logistic regression to assess if having any nursing documentation of provider notification in the 4 h prior to a paired reading confirming occult hypoxemia was more likely compared to a paired reading confirming normal oxygen status, adjusting for characteristics significantly associated with nursing documentation. We applied conditional logistic regression to assess if having any nursing documentation of provider notification was more likely in the 4-hour window preceding a paired reading compared to the 4-hour window 24 h earlier separately for occult hypoxemia, visible hypoxemia, and normal oxygenation. RESULTS: There were data from 1910 patients hospitalized with COVID-19 who had 44,972 paired readings and an average of 26.5 (34.5) nursing documentation of provider notification events. The mean age was 63.4 (16.2). Almost half (866/1910, 45.3 %) were White, 701 (36.7 %) were Black, and 239 (12.5 %) were Hispanic. Having any nursing documentation of provider notification was 46 % more common in the 4 h before an occult hypoxemia paired reading compared to a normal oxygen status paired reading (OR 1.46, 95 % CI: 1.28-1.67). Comparing the 4 h immediately before the reading to the 4 h one day preceding the paired reading, there was a higher likelihood of having any nursing documentation of provider notification for both evident (OR 1.45, 95 % CI 1.24-1.68) and occult paired readings (OR 1.26, 95 % CI 1.04-1.53). CONCLUSION: This study finds that nursing documentation of provider notification significantly increases prior to confirmed occult hypoxemia, which has potential in proactively identifying occult hypoxemia and other clinical issues. There is potential value to encouraging standardized documentation of nurse concern, including communication to providers, to facilitate its inclusion in clinical decision-making.

Patient portal messages to support an age-friendly health system for persons with dementia.

BACKGROUND: Patient portal secure messaging can support age-friendly dementia care, yet little is known about care partner use of the portal and how message concerns relate to age-friendly issues. METHODS: We conducted a two-part observational study. We first assessed the feasibility of automating care partner identification from patient portal messages by developing and testing a natural language processing (NLP) rule-based classification system from portal messages of 1973 unique patients 65 and older. Second, two independent reviewers manually coded a randomly selected sample of portal messages for 987 persons with dementia to identify the frequency of expressed needs from the 4M domains of an Age-Friendly Health System (medications, mentation, mobility, and what matters). RESULTS: A total of 267 (13.53%) of 1973 messages sent from older adults' portal accounts were identified through manual coding as sent by a nonpatient author. The NLP model performance to identify nonpatient authors demonstrated an AUC of 0.90. Most messages sent from the accounts of persons with dementia contained content relevant to the 4Ms (60%, 601/987), with the breakdown as follows: medications-36% (357/987), mobility-10% (101/987), mentation-16% (153/987), and what matters (aligning care with specific health goals and care preferences)-21%, 207/987. CONCLUSIONS: Patient portal messaging offers an avenue to identify care partners and meet the informational needs of persons with dementia and their care partners.

The Annual Wellness Visit Health Risk Assessment: Potential of Patient Portal-Based Completion and Patient-Oriented Education and Support.

Background and Objectives: Patient portals are secure online platforms that allow patients to perform electronic health management tasks and engage in bidirectional information exchange with their care team. Some health systems administer Medicare Annual Wellness Visit (AWV) health risk assessments through the patient portal. Scalable opportunities from portal-based administration of risk assessments are not well understood. Our objective is 2-fold-to understand who receives vs misses an AWV and health risk assessment and explore who might be missed with portal-based administration. Research Design and Methods: This is an observational study of electronic medical record and patient portal data (10/03/2021-10/02/2022) for 12 756 primary care patients 66+ years from a large academic health system. Results: Two-thirds (n = 8420) of older primary care patients incurred an AWV; 81.0% of whom were active portal users. Older adults who were active portal users were more likely to incur AWV than those who were not, though portal use was high in both groups (81.0% with AWV vs 76.8% without; p < .001). Frequently affirmative health risk assessment categories included falls/balance concerns (44.2%), lack of a documented advanced directive (42.3%), sedentary behaviors (39.9%), and incontinence (35.1%). Mean number of portal messages over the 12-month observation period varied from 7.2 among older adults affirmative responses to concerns about safety at home to 13.8 for older adults who reported difficulty completing activities of daily living. Portal messaging varied more than 2-fold across affirmative health risk categories and were marginally higher with greater number affirmative (mean = 13.8 messages/year no risks; 19.6 messages/year 10+ risks). Discussion and Implications: Most older adults were active portal users-a group more likely to have incurred a billed AWV. Efforts to integrate AWV risk assessments in the patient portal may streamline administration and scalability for dissemination of tailored electronically mediated preventive care but must attend to equity issues.

The Medicare annual wellness visit: An opportunity to improve health system identification of hearing loss?

BACKGROUND: Hearing loss is prevalent and consequential but under-diagnosed and managed. The Medicare Annual Wellness Visit (AWV) health risk assessment elicits patient-reported hearing concerns but whether such information affects documentation, diagnosis, or referral is unknown. METHODS: We use 5 years of electronic medical record (EMR) data (2017-2022) for a sample of 13,776 older primary care patients. We identify the first (index) AWV indication of hearing concerns and existing and subsequent hearing loss EMR diagnoses (visit diagnoses or problem list diagnoses) and audiology referrals. For a 20% random sample of AWV notes (n = 474) we compared hearing loss EMR diagnoses to documentation of (1) hearing concerns, (2) hearing loss/aid use, and (3) referrals for hearing care. RESULTS: Of 3845 (27.9%) older adults who identified hearing concerns (mean age 79.1 years, 57% female, 75% white) 24% had an existing hearing diagnosis recorded. Among 474 patients with AWV clinical notes reviewed, 90 (19%) had an existing hearing loss diagnosis. Clinicians were more likely to document hearing concerns or hearing loss/aid use for those with (vs. without) an existing EMR diagnosis (50.6% vs. 35.9%, p = 0.01; 68.9% vs. 37.5%, p < 0.001, respectively). EMR diagnoses of hearing loss were recorded for no more than 40% of those with indicated hearing concerns. Among those without prior diagnosis 38 (9.9%) received a hearing care referral within 1 month. Subgroup analysis suggest greater likelihood of documenting hearing concerns for patients age 80+ (OR:1.51, 95% confidence interval [CI]: 1.03, 2.19) and decreased likelihood of documenting known hearing loss among patients with more chronic conditions (OR: 0.49, 95% CI: 0.27, 0.9), with no differences observed by race. CONCLUSION: Documentation of hearing loss in EMR and AWV clinical notes is limited among older adults with subjective hearing concerns. Systematic support and incorporation of hearing into EMR and clinical notes may increase hearing loss visibility by care teams.

Histone serotonylation in dorsal raphe nucleus contributes to stress- and antidepressant-mediated gene expression and behavior.

Mood disorders are an enigmatic class of debilitating illnesses that affect millions of individuals worldwide. While chronic stress clearly increases incidence levels of mood disorders, including major depressive disorder (MDD), stress-mediated disruptions in brain function that precipitate these illnesses remain largely elusive. Serotonin-associated antidepressants (ADs) remain the first line of therapy for many with depressive symptoms, yet low remission rates and delays between treatment and symptomatic alleviation have prompted skepticism regarding direct roles for serotonin in the precipitation and treatment of affective disorders. Our group recently demonstrated that serotonin epigenetically modifies histone proteins (H3K4me3Q5ser) to regulate transcriptional permissiveness in brain. However, this non-canonical phenomenon has not yet been explored following stress and/or AD exposures. Here, we employed a combination of genome-wide and biochemical analyses in dorsal raphe nucleus (DRN) of male and female mice exposed to chronic social defeat stress, as well as in DRN of human MDD patients, to examine the impact of stress exposures/MDD diagnosis on H3K4me3Q5ser dynamics, as well as associations between the mark and depression-related gene expression. We additionally assessed stress-induced/MDD-associated regulation of H3K4me3Q5ser following AD exposures, and employed viral-mediated gene therapy in mice to reduce H3K4me3Q5ser levels in DRN and examine its impact on stress-associated gene expression and behavior. We found that H3K4me3Q5ser plays important roles in stress-mediated transcriptional plasticity. Chronically stressed mice displayed dysregulated H3K4me3Q5ser dynamics in DRN, with both AD- and viral-mediated disruption of these dynamics proving sufficient to attenuate stress-mediated gene expression and behavior. Corresponding patterns of H3K4me3Q5ser regulation were observed in MDD subjects on vs. off ADs at their time of death. These findings thus establish a neurotransmission-independent role for serotonin in stress-/AD-associated transcriptional and behavioral plasticity, observations of which may be of clinical relevance to human MDD and its treatment.

Care partners and consumer health information technology: A framework to guide systems-level initiatives in support of digital health equity.

Introduction: Consumer-oriented health information technologies (CHIT) such as the patient portal have a growing role in care delivery redesign initiatives such as the Learning Health System. Care partners commonly navigate CHIT demands alongside persons with complex health and social needs, but their role is not well specified. Methods: We assemble evidence and concepts from the literature describing interpersonal communication, relational coordination theory, and systems-thinking to develop an integrative framework describing the care partner's role in applied CHIT innovations. Our framework describes pathways through which systematic engagement of the care partner affects longitudinal work processes and multi-level outcomes relevant to Learning Health Systems. Results: Our framework is grounded in relational coordination, an emerging theory for understanding the dynamics of coordinating work that emphasizes role-based relationships and communication, and the Systems Engineering Initiative for Patient Safety (SEIPS) model. Cross-cutting work systems geared toward explicit and purposeful support of the care partner role through CHIT may advance work processes by promoting frequent, timely, accurate, problem-solving communication, reinforced by shared goals, shared knowledge, and mutual respect between patients, care partners, and care team. We further contend that systematic engagement of the care partner in longitudinal work processes exerts beneficial effects on care delivery experiences and efficiencies at both individual and organizational levels. We discuss the utility of our framework through the lens of an illustrative case study involving patient portal-mediated pre-visit agenda setting. Conclusions: Our framework can be used to guide applied embedded CHIT interventions that support the care partner role and bring value to Learning Health Systems through advancing digital health equity, improving user experiences, and driving efficiencies through improved coordination within complex work systems.

Serial Postoperative Circulating Tumor DNA Assessment Has Strong Prognostic Value During Long-Term Follow-Up in Patients With Breast Cancer.

PURPOSE: Here, we report the sensitivity of a personalized, tumor-informed circulating tumor DNA (ctDNA) assay (Signatera) for detection of molecular relapse during long-term follow-up of patients with breast cancer. METHODS: A total of 156 patients with primary breast cancer were monitored clinically for up to 12 years after surgery and adjuvant chemotherapy. Semiannual blood samples were prospectively collected, and analyzed retrospectively to detect residual disease by ultradeep sequencing using ctDNA assays, developed from primary tumor whole-exome sequencing data. RESULTS: Personalized Signatera assays detected ctDNA ahead of clinical or radiologic relapse in 30 of the 34 patients who relapsed (patient-level sensitivity of 88.2%). Relapse was predicted with a lead interval of up to 38 months (median, 10.5 months; range, 0-38 months), and ctDNA positivity was associated with shorter relapse-free survival (P < .0001) and overall survival (P < .0001). All relapsing triple-negative patients (n = 7/23) had a ctDNA-positive test within a median of 8 months (range, 0-19 months), while the 16 nonrelapsed patients with triple-negative breast cancer remained ctDNA-negative during a median follow-up of 58 months (range, 8-99 months). The four patients who had negative tests before relapse all had hormone receptor-positive (HR+) disease and conversely, five of the 122 nonrelapsed patients (all HR+) had an occasional positive test. CONCLUSION: Serial postoperative ctDNA assessment has strong prognostic value, provides a potential window for earlier therapeutic intervention, and may enable more effective monitoring than current clinical tests such as cancer antigen 15-3. Our study provides evidence that those with serially negative ctDNA tests have superior clinical outcomes, providing reassurance to patients with breast cancer. For select cases with HR+ disease, decisions about treatment management might require serial monitoring despite the ctDNA-positive result.

Patient and care partner assessments of diagnostic excellence in the emergency department: A cognitive interview study.

Background: Diagnostic excellence encompasses both receiving an accurate and timely explanation of a health problem that was communicated well, and the process it took to get to the correct diagnosis. Directly eliciting patients' perceptions of their diagnostic experience and outcomes after emergency visits is a promising method of assessing diagnostic excellence. However, little is known about how patients interpret and respond to questions about their diagnostic experiences and outcomes. Objective: To analyze patient and care partners' interpretation of questions capturing patient-reported diagnostic excellence in emergency settings. Design: Cognitive interviews using think-aloud and probing methods. Settings: Interviews were conducted virtually and via phone calls. Participants were patients or care partners of patients recently discharged from three emergency departments within a single academic health system in the Mid-Atlantic region of the US. Participants: 15 patients and care partners, 18 years or older, with recent emergency department experiences. Methods: Qualitative analysis using a deductive approach was used to code transcripts and analyze participant responses to Patient-Report to Improve Diagnostic Excellence in Emergency Department (PRIME-ED) questionnaire items. Themes of patient and care partners' questionnaire interpretations are presented descriptively. Results: 80% of participants were female, 47% were between the ages of 18-24 years, 47% of participants were White, and 7% were Hispanic/Latino. Participants shared their interpretations of diagnostic excellence following PRIME-ED domains: diagnostic accuracy and care team skills, their comprehension of the diagnosis, provider communication of uncertainty, and quality of diagnostic communication, including whether they felt the care team communicated well, adapted communication to their needs, listened and took concerns seriously, treated them as an equal, and provided clear, sufficient, and functional communication about follow-up steps. Responses indicated that patients and care partners can identify diagnostic errors, rationalize why their diagnosis was inaccurate, and assess whether diagnostic excellence was achieved. Respondents identified factors that contributed to their assessments of diagnostic accuracy and the quality of diagnostic communication. The quality of diagnostic communication contributed to patient perception of diagnostic accuracy and understanding of the diagnosis. Conclusions: Patient report is a useful tool for assessing diagnostic excellence in emergency settings. Our patient and care partners describe how they assess diagnostic excellence in the emergency department.Registration: N/A.Tweetable abstract: Patients and care partners provide accessible and useful information to assess diagnostic practices and diagnostic excellence in emergency departments.

The associations between rapid response systems and their components with patient outcomes: A scoping review.

Background: While rapid response systems have been widely implemented, their impact on patient outcomes remains unclear. Further understanding of their components-including medical emergency team triggers, medical emergency team member composition, additional roles in patient care beyond responding to medical emergency team events, and their involvement in "Do-Not-Resuscitate" order placement-may elucidate the relationship between rapid response systems and outcomes. Objective: To explore how recent studies have examined rapid response system components in the context of relevant adverse patient outcomes, such as in-hospital cardiac arrests and hospital mortality. Design: Scoping review. Methods: PubMed, CINAHL, and Embase were searched for articles published between November 2014 and June 2022. Studies mainly focused on rapid response systems and associations with in-hospital cardiac arrests were considered. The following were extracted for analysis: study design, location, sample size, participant characteristics, system characteristics (including medical emergency team member composition, additional system roles outside of medical emergency team events), medical emergency team triggers, in-hospital cardiac arrests, and hospital mortality. Results: Thirty-four studies met inclusion criteria. While most studies described triggers used, few analyzed medical emergency team trigger associations with outcomes. Of those, medical emergency team triggers relating to respiratory abnormalities and use of multiple triggers to activate the medical emergency team were associated with adverse patient outcomes. Many studies described medical emergency team member composition, but the way composition was reported varied across studies. Of the seven studies with dedicated medical emergency team members, six found their systems were associated with decreased incidence of in-hospital cardiac arrests. Six of seven studies that described additional medical emergency team roles in educating staff in rapid response system use found their systems were associated with significant decreases in adverse patient outcomes. Four of five studies that described proactive rounding responsibilities reported found their systems were associated with significant decreases in adverse patient outcomes. Reporting of rapid response system involvement in "Do-Not-Resuscitate" order placement was variable across studies. Conclusions: Inconsistencies in describing rapid response system components and related data and outcomes highlights how these systems are complex to a degree not fully captured in existing literature. Further large-scale examination of these components across institutions is warranted. Development and use of robust and standardized metrics to track data related to rapid response system components and related outcomes are needed to optimize these systems and improve patient outcomes.

Origen anómalo de la arteria coronaria izquierda originándose de la arteria pulmonar. Reporte de caso y revisión de literatura / Anomalous origin of the left coronary artery originating itself of the pulmonary artery. Report of case and revision of literature

Se presenta el caso de un lactante de 2 meses de edad que consultó por tos y dificultad respiratoria; al ser admitido en el servicio de urgencias, el abordaje inicial fue de una infección respiratoria baja (bronquitis) pero la evolución tórpida y la presencia de cardiomegalia hizo sospechar una cardiopatía, diagnosticándose origen anómalo de la arteria coronaria izquierda que nace de la arteria pulmonar, la cual fue tratada quirúrgicamente con resultado favorable.