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Patient and Family Engagement During Treatment Decisions in an ICU: A Discourse Analysis of the Electronic Health Record.

ABSTRACT: OBJECTIVES:Shared decision-making is recommended for critically ill adults who face major, preference-sensitive treatment decisions. Yet, little is known about when and how patients and families are engaged in treatment decision-making over the longitudinal course of a critical illness. We sought to characterize patterns of treatment decision-making by evaluating clinician discourse in the electronic health record of critically ill adults who develop chronic critical illness or die in an ICU. DESIGN, SETTING, AND PATIENTS:We conducted qualitative content analysis of the electronic health record of 52 adult patients, admitted to a medical ICU in a tertiary medical center from January 1, 2016, to December 31, 2016. We included patients who met a consensus definition of chronic critical illness (26 patients) and a matched sample who died or transitioned to hospice care in the ICU before developing chronic critical illness (26 patients). INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:Characterization of clinician decision-making discourse documented during the course of an ICU stay. Clinician decision-making discourse in the electronic health record followed a single, consistent pattern across both groups. Initial decisions about admission to the ICU focused on specific interventions that can only be provided in an ICU environment (intervention-focused decisions). Following admission, the documented rationale for additional treatments was guided by physiologic abnormalities (physiology-centered decisions). Clinician discourse transitioned to documented engagement of patients and families in decision-making when treatments failed to achieve specified physiologic goals. The phrase "goals of care" is common in the electronic health record and is used to indicate poor prognosis, to describe conflict with families, and to provide rationale for treatment limitations. CONCLUSIONS:Clinician discourse in the electronic health record reveals that patient physiology strongly guides treatment decision-making throughout the longitudinal course of critical illness. Documentation of patient and family engagement in treatment decision-making is limited until available medical treatments fail to achieve physiologic goals.

SUBMITTER: Kruser JM

PROVIDER: S-EPMC6522290 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Patient and Family Engagement During Treatment Decisions in an ICU: A Discourse Analysis of the Electronic Health Record.

Kruser Jacqueline M JM Benjamin Brian T BT Gordon Elisa J EJ Michelson Kelly N KN Wunderink Richard G RG Holl Jane L JL Schwarze Margaret L ML

Critical care medicine 20190601 6

<h4>Objectives</h4>Shared decision-making is recommended for critically ill adults who face major, preference-sensitive treatment decisions. Yet, little is known about when and how patients and families are engaged in treatment decision-making over the longitudinal course of a critical illness. We sought to characterize patterns of treatment decision-making by evaluating clinician discourse in the electronic health record of critically ill adults who develop chronic critical illness or die in an ...[more]

PMID: 30896465

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Project description:BackgroundElectronic health record (EHR) use can impede or augment patient-physician communication. However, little research explores the use of an educational comic to improve patient-physician-EHR interactions.ObjectiveTo evaluate the impact of an educational comic on patient EHR self-advocacy behaviors to promote patient engagement with the EHR during clinic visits.MethodsWe conducted a prospective observational study with adult patients and parents of pediatric patients at the University of Chicago General Internal Medicine (GIM) and Pediatric Primary Care (PPC) clinics. We developed an educational comic highlighting EHR self-advocacy behaviors and distributed it to study participants during check-in for their primary care visits between May 2017 and May 2018. Participants completed a survey immediately after their visit, which included a question on whether they would be interested in a follow-up telephone interview. Of those who expressed interest, 50 participants each from the adult and pediatric parent cohorts were selected at random for follow-up telephone interviews 8 months (range 3-12 months) post visit.ResultsOverall, 71.0% (115/162) of adult patients and 71.6% (224/313) of pediatric parents agreed the comic encouraged EHR involvement. African American and Hispanic participants were more likely to ask to see the screen and become involved in EHR use due to the comic (adult P=.01, P=.01; parent P=.02, P=.006, respectively). Lower educational attainment was associated with an increase in parents asking to see the screen and to be involved (ρ=-0.18, P=.003; ρ=-0.19, P<.001, respectively) and in adults calling for physician attention (ρ=-0.17, P=.04), which was confirmed in multivariate analyses. Female GIM patients were more likely than males to ask to be involved (median 4 vs 3, P=.003). During follow-up phone interviews, 90% (45/50) of adult patients and all pediatric parents (50/50) remembered the comic. Almost half of all participants (GIM 23/50, 46%; PPC 21/50, 42%) recalled at least one best-practice behavior. At subsequent visits, adult patients reported increases in asking to see the screen (median 3 vs 4, P=.006), and pediatric parents reported increases in asking to see the screen and calling for physician attention (median 3 vs 4, Ps<.001 for both). Pediatric parents also felt that the comic had encouraged them to speak up and get more involved with physician computer use since the index visit (median 4 vs 4, P=.02) and that it made them feel more empowered to get involved with computer use at future visits (median 3 vs 4, P<.001).ConclusionsOur study found that an educational comic may improve patient advocacy for enhanced patient-physician-EHR engagement, with higher impacts on African American and Hispanic patients and patients with low educational attainment.

Project description:BackgroundElectronic health records (EHRs) are ubiquitous. Yet little is known about the use of EHRs for prospective research purposes, and even less is known about patient perspectives regarding the use of their EHR for research.ObjectiveThis paper reports results from the initial obesity project from the Greater Plains Collaborative that is part of the Patient-Centered Outcomes Research Institute's National Patient-Centered Clinical Research Network (PCORNet). The purpose of the project was to (1) assess the ability to recruit samples of adults of child-rearing age using the EHR; (2) prospectively assess the willingness of adults of child-rearing age to participate in research, and their willingness (if parents) to have their children participate in medical research; and (3) to assess their views regarding the use of their EHRs for research.MethodsThe EHRs of 10 Midwestern academic medical centers were used to select patients. Patients completed a survey that was designed to assess patient willingness to participate in research and their thoughts about the use of their EHR data for research. The survey included questions regarding interest in medical research, as well as basic demographic and health information. A variety of contact methods were used.ResultsA cohort of 54,269 patients was created, and 3139 (5.78%) patients responded. Completers were more likely to be female (53.84%) and white (85.84%). These and other factors differed significantly by site. Respondents were overwhelmingly positive (83.9%) about using EHRs for research.ConclusionsEHRs are an important resource for engaging patients in research, and our respondents concurred. The primary limitation of this work was a very low response rate, which varied by the method of contact, geographic location, and respondent characteristics. The primary strength of this work was the ability to ascertain the clinically observed characteristics of nonrespondents and respondents to determine factors that may contribute to participation, and to allow for the derivation of reliable study estimates for weighting responses and oversampling of difficult-to-reach subpopulations. These data suggest that EHRs are a promising new and effective tool for patient-engaged health research.

Project description:Rationale & objectiveElectronic health record portals are increasingly emphasized in chronic kidney disease (CKD). However, associations of portal use with clinical and patient-centered outcomes remain unknown.Study designCross-sectional survey (April 2015 to March 2018).Setting & participantsNondialysis patients with CKD from nephrology clinics within 1 academic medical center.ExposuresPatient demographics (age, sex, race, ethnicity, education, and income), kidney function.OutcomesAssociation between portal use as an outcome and exposures. Additionally, associations of portal use and patient demographics with 4 patient-centered outcomes (CKD-specific knowledge, stress, and 2 self-ratings of health).Analytic approachLogistic regression to examine associations between patient portal use, demographics, and kidney function. Linear regression to examine associations between portal use and patient-centered outcomes.ResultsOf 245 participants, mean age was 60 ± 17 (SD) years, 182 (77%) were White, 121 (49%) were women, 230 (96%) had a high school education or higher, and 96 (45%) had <$50,000 annual income. Examining portal use, 159 (65%) used the portal as follows: checking laboratory test results, 157 (99%); managing appointments, 133 (84%); messaging providers, 131 (82%); viewing medical history, 127 (80%); reviewing educational resources, 113 (71%); and renewing prescriptions, 98 (62%). African Americans (OR, 0.34; 95% CI, 0.16-0.72 vs White patients), patients with less formal education (OR, 0.06; 95% CI, 0.01-0.36), and those with lower income (OR, 0.28; 95% CI, 0.13-0.60; and OR, 0.26; 95% CI, 0.12-0.54 comparing income < $25,000 and $25,000-$50,000, respectively, with ≥$50,000) had lower odds of using the portal. In adjusted analysis, only lower income predicted lower portal use. Examining patient-centered outcomes in univariable analysis, portal users had higher knowledge (β = 4.89; P = 0.02), higher ratings of current health (β = 0.28; P = 0.03), and lower CKD-related stress (β = -0.18; P = 0.05). In adjusted analysis, only patient demographics and/or kidney function remained independent predictors of patient-centered outcomes.LimitationsCross-sectional study design, cannot determine causality.ConclusionsInterventions are needed to ensure that all patients have access to portals to mitigate disparities in care.

Project description:ObjectiveA recent Institute of Medicine report called for attention to safety issues related to electronic health records (EHRs). We analyzed EHR-related safety concerns reported within a large, integrated healthcare system.MethodsThe Informatics Patient Safety Office of the Veterans Health Administration (VA) maintains a non-punitive, voluntary reporting system to collect and investigate EHR-related safety concerns (ie, adverse events, potential events, and near misses). We analyzed completed investigations using an eight-dimension sociotechnical conceptual model that accounted for both technical and non-technical dimensions of safety. Using the framework analysis approach to qualitative data, we identified emergent and recurring safety concerns common to multiple reports.ResultsWe extracted 100 consecutive, unique, closed investigations between August 2009 and May 2013 from 344 reported incidents. Seventy-four involved unsafe technology and 25 involved unsafe use of technology. A majority (70%) involved two or more model dimensions. Most often, non-technical dimensions such as workflow, policies, and personnel interacted in a complex fashion with technical dimensions such as software/hardware, content, and user interface to produce safety concerns. Most (94%) safety concerns related to either unmet data-display needs in the EHR (ie, displayed information available to the end user failed to reduce uncertainty or led to increased potential for patient harm), software upgrades or modifications, data transmission between components of the EHR, or 'hidden dependencies' within the EHR.DiscussionEHR-related safety concerns involving both unsafe technology and unsafe use of technology persist long after 'go-live' and despite the sophisticated EHR infrastructure represented in our data source. Currently, few healthcare institutions have reporting and analysis capabilities similar to the VA.ConclusionsBecause EHR-related safety concerns have complex sociotechnical origins, institutions with long-standing as well as recent EHR implementations should build a robust infrastructure to monitor and learn from them.

Project description:Electronic health record (EHR) patient portals allow individuals to access their medical information with the intent of patient empowerment. However, little is known about portal use in nephrology patients. We addressed this gap by characterizing adoption of an EHR portal, assessing secular trends, and examining the association of portal adoption and BP control (<140/90 mmHg).Patients seen between January 1, 2010, and December 31, 2012, at any of four university-affiliated nephrology offices who had at least one additional nephrology follow-up visit before June 30, 2013, were included. Sociodemographic characteristics, comorbidities, clinical measurements, and office visits were abstracted from the EHR. Neighborhood median household income was obtained from the American Community Survey 2012.Of 2803 patients, 1098 (39%) accessed the portal. Over 87% of users reviewed laboratory results, 85% reviewed their medical information (e.g., medical history), 85% reviewed or altered appointments, 77% reviewed medications, 65% requested medication refills, and 31% requested medical advice from their renal provider. In adjusted models, older age, African-American race (odds ratio [OR], 0.50; 95% confidence interval [95% CI], 0.39 to 0.64), Medicaid status (OR, 0.53; 95% CI, 0.36 to 0.77), and lower neighborhood median household income were associated with not accessing the portal. Portal adoption increased over time (2011 versus 2010: OR, 1.38 [95% CI, 1.09 to 1.75]; 2012 versus 2010: OR, 1.95 [95% CI, 1.44 to 2.64]). Portal adoption was correlated with BP control in patients with a diagnosis of hypertension; however, in the fully adjusted model this was somewhat attenuated and no longer statistically significant (OR, 1.11; 95% CI, 0.99 to 1.24).While portal adoption appears to be increasing, greater attention is needed to understand why vulnerable populations do not access it. Future research should examine barriers to the use of e-health technologies in underserved patients with CKD, interventions to address them, and their potential to improve outcomes.

Dataset Information

Patient and Family Engagement During Treatment Decisions in an ICU: A Discourse Analysis of the Electronic Health Record.

Publications

Patient and Family Engagement During Treatment Decisions in an ICU: A Discourse Analysis of the Electronic Health Record.

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