Long COVID awareness and receipt of medical care: a survey among populations at risk for disparities.

Introduction: The COVID-19 pandemic has been characterized by disparities in disease burden and medical care provision. Whether these disparities extend to long COVID awareness and receipt of medical care is unknown. We aimed to characterize awareness of long COVID and receipt of medical care for long COVID symptoms among populations who experience disparities in the United States (US). Methods: We conducted a cross-sectional survey among a national sample of US adults between January 26-February 5, 2023. We surveyed approximately 2,800 adults drawn from the Ipsos probability-based KnowledgePanel® who identify as White, Black, or Hispanic, with over-sampling of Black, Hispanic, and Spanish-proficient adults. Awareness of long COVID was assessed with the question, "Have you heard of long COVID? This is also referred to as post-COVID, Long-haul COVID, Post-acute COVID-19, or Chronic COVID." Respondents reporting COVID-19 symptoms lasting longer than 1 month were classified as having long COVID and asked about receipt of medical care. Results: Of the 2,828 respondents, the mean age was 50.4 years, 52.8% were female, 40.2% identified as Hispanic, 29.8% as Black, and 26.7% as White. 18% completed the survey in Spanish. Overall, 62.5% had heard of long COVID. On multivariate analysis, long COVID awareness was lower among respondents who identified as Black (OR 0.64; 95% CI 0.51, 0.81), Hispanic and completed the survey in English (OR 0.59; 95% CI 0.46, 0.76), and Hispanic and completed the survey in Spanish (OR 0.31, 95% C.I. 0.23, 0.41), compared to White respondents (overall p < 0.001). Long COVID awareness was also associated with educational attainment, higher income, having health insurance, prior history of COVID-19 infection, and COVID-19 vaccination. Among those reporting symptoms consistent with long COVID (n = 272), 26.8% received medical care. Older age, longer symptom duration and greater symptom impact were associated with receipt of medical care for long COVID symptoms. Of those who received care, most (77.8%) rated it as less than excellent on a 5-point scale. Discussion: This survey reveals limited awareness of long COVID and marked disparities in awareness according to race, ethnicity, and language. Targeted public health campaigns are needed to raise awareness.

Rationale and Design of Healthy at Home for COPD: an Integrated Remote Patient Monitoring and Virtual Pulmonary Rehabilitation Pilot Study.

Chronic Obstructive Pulmonary Disease (COPD) is a common, costly, and morbid condition. Pulmonary rehabilitation, close monitoring, and early intervention during acute exacerbations of symptoms represent a comprehensive approach to improve outcomes, but the optimal means of delivering these services is uncertain. Logistical, financial, and social barriers to providing healthcare through face-to-face encounters, paired with recent developments in technology, have stimulated interest in exploring alternative models of care. The Healthy at Home study seeks to determine the feasibility of a multimodal, digitally enhanced intervention provided to participants with COPD longitudinally over six months. This paper details the recruitment, methods, and analysis plan for the study, which is recruiting 100 participants in its pilot phase. Participants were provided with several integrated services including a smartwatch to track physiological data, a study app to track symptoms and study instruments, access to a mobile integrated health program for acute clinical needs, and a virtual comprehensive pulmonary support service. Participants shared physiologic, demographic, and symptom reports, electronic health records, and claims data with the study team, facilitating a better understanding of their symptoms and potential care needs longitudinally. The Healthy at Home study seeks to develop a comprehensive digital phenotype of COPD by tracking and responding to multiple indices of disease behavior and facilitating early and nuanced responses to changes in participants' health status. This study is registered at Clinicaltrials.gov (NCT06000696).

Patients' Perspectives on Plans Generated During Primary Care Visits and Self-Reported Adherence at 3 Months: Data From a Randomized Trial.

BACKGROUND: Effective primary care necessitates follow-up actions by the patient beyond the visit. Prior research suggests room for improvement in patient adherence. OBJECTIVE: This study sought to understand patients' views on their primary care visits, the plans generated therein, and their self-reported adherence after 3 months. METHODS: As part of a large multisite cluster randomized pragmatic trial in 3 health care organizations, patients completed 2 surveys-the first within 7 days after the index primary care visit and another 3 months later. For this analysis of secondary outcomes, we combined the results across all study participants to understand patient adherence to care plans. We recorded patient characteristics and survey responses. Cross-tabulation and chi-square statistics were used to examine bivariate associations, adjusting for multiple comparisons when appropriate. We used multivariable logistic regression to assess how patients' intention to follow, agreement, and understanding of their plans impacted their plan adherence, allowing for differences in individual characteristics. Qualitative content analysis was conducted to characterize the patient's self-reported plans and reasons for adhering (or not) to the plan 3 months later. RESULTS: Of 2555 patients, most selected the top box option (9=definitely agree) that they felt they had a clear plan (n=2011, 78%), agreed with the plan (n=2049, 80%), and intended to follow the plan (n=2108, 83%) discussed with their provider at the primary care visit. The most common elements of the plans reported included reference to exercise (n=359, 14.1%), testing (laboratory, imaging, etc; n=328, 12.8%), diet (n=296, 11.6%), and initiation or adjustment of medications; (n=284, 11.1%). Patients who strongly agreed that they had a clear plan, agreed with the plan, and intended to follow the plan were all more likely to report plan completion 3 months later (P<.001) than those providing less positive ratings. Patients who reported plans related to following up with the primary care provider (P=.008) to initiate or adjust medications (P≤.001) and to have a specialist visit were more likely to report that they had completely followed the plan (P=.003). Adjusting for demographic variables, patients who indicated intent to follow their plan were more likely to follow-through 3 months later (P<.001). Patients' reasons for completely following the plan were mainly that the plan was clear (n=1114, 69.5%), consistent with what mattered (n=1060, 66.1%), and they were determined to carry through with the plan (n=887, 53.3%). The most common reasons for not following the plan were lack of time (n=217, 22.8%), having decided to try a different approach (n=105, 11%), and the COVID-19 pandemic impacted the plan (n=105, 11%). CONCLUSIONS: Patients' initial assessment of their plan as clear, their agreement with the plan, and their initial willingness to follow the plan were all strongly related to their self-reported completion of the plan 3 months later. Patients whose plans involved lifestyle changes were less likely to report that they had "completely" followed their plan. TRIAL REGISTRATION: ClinicalTrials.gov NCT03385512; https://clinicaltrials.gov/study/NCT03385512. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/30431.

From COVID-19 Vaccine Hesitancy to Vaccine Acceptance: Results of a Longitudinal Survey.

OBJECTIVES: COVID-19 vaccines are widely available, but uptake is suboptimal. To develop strategies to increase vaccination rates, we sought to (1) characterize adults initially hesitant to be vaccinated for COVID-19 who later received the vaccine and (2) identify factors associated with their vaccination decision. METHODS: In January 2021, we conducted an online survey of US adults via Prolific that assessed vaccination intent, COVID-19-related knowledge and attitudes, and demographic characteristics. In May 2021, we recontacted respondents to assess vaccination status and factors influencing their vaccination decision. We used χ2 statistics and t tests to examine associations between respondents' vaccination status and their characteristics, knowledge, and attitudes. We analyzed reasons for vaccination using thematic analysis. RESULTS: Of 756 initially vaccine-hesitant respondents, 529 (70.0%) completed the follow-up survey. Nearly half of those initially not sure about vaccination (47.3%, 112 of 237) were vaccinated at follow-up, while 21.2% (62 of 292) of those initially planning not to be vaccinated were vaccinated at follow-up. Of those initially not sure, higher educational attainment, greater knowledge of COVID-19, and a doctor's recommendation were associated with vaccination. Of those initially intending not to be vaccinated, male sex, Democratic political affiliation, receipt of an influenza shot within 5 years, being more worried about COVID-19, and having greater COVID-19 knowledge were associated with increased likelihood of being vaccinated. Of 167 respondents who gave reasons for vaccination, protecting oneself and others (59.9%), practical issues (29.9%), social influences (17.4%), and vaccine safety (13.8%) were the main reasons. CONCLUSION: Providing information on the protective value of vaccination, implementing rules that make remaining unvaccinated burdensome, making vaccination easy, and providing social support may influence vaccine-hesitant adults to accept vaccination.

Impact of a physician recommendation on COVID-19 vaccination intent among vaccine hesitant individuals.

OBJECTIVE: To test the impact of varied physician recommendations on COVID-19 vaccine hesitancy. METHODS: We conducted a vignette-based experimental survey on Prolific, an online research platform. COVID-19 vaccine hesitant, adult panel members were assigned to one of five messages that varied by recommendation style (participatory vs explicit) and strategy (acknowledgement of concerns; comparison to the flu shot; statement that millions of people have already received it; emphasis on protecting others). Vaccine hesitancy was re-assessed with the question, "Would you get vaccinated at this visit?". RESULTS: Of the 752 participants, 60.1% were female, 43.4% Black, 23.6% Latino, and 33.0% White; mean age was 35.6 years. Overall, 33.1% of the initially "not sure" and 13.1% of the initially "no" participants became less hesitant following any recommendation. Among the "not sure" participants, 20.3% of those who received a participatory recommendation became less hesitant compared with 34.3%- 39.5% for the explicit recommendations. The "protect others" message was most effective among initially "no" participants; 19.8% become less hesitant, compared to 8.7% for the participatory recommendation. CONCLUSION: A physician recommendation may reduce COVID-19 vaccine hesitancy. PRACTICE IMPLICATIONS: An explicit recommendation and "protect others" message appear to be important elements of a physician recommendation for COVID-19 vaccination.

Mobilizing the clinical trial ecosystem to drive adoption of master protocols.

Master protocol studies typically use an overarching protocol to answer several questions by guiding a variety of sub-studies. These sub-studies can incorporate multiple diseases, therapies, or both. Although this innovative approach offers many benefits, including the ability to deliver clinical research that is more patient-centric and efficient, several common barriers curtail widespread adoption. The Clinical Trials Transformation Initiative (CTTI) convened industry representatives, regulatory agencies, patient groups, and academic institutions to identify emerging best practices and develop resources designed to help sponsors and other stakeholders overcome these challenges. We first identify some broad changes needed in the clinical trials ecosystem to facilitate mainstream adoption of master protocol studies, and we subsequently summarize CTTI's resources designed to support this effort.

Can sharing clinic notes improve communication and promote self-management? A qualitative study of patients with COPD.

OBJECTIVE: To understand the impact of sharing clinic notes on communication and self-management among patients with COPD and to develop recommendations for writing patient-centered notes. METHODS: Thirty patients with COPD participated in 'think-aloud' interviews in which they reviewed their COPD-specific clinic note. Interviews were coded using conventional content analysis, organized by the six-function communication framework. RESULTS: Participants were predominantly White (93.3%), with a mean age of 65.5 years. More than half had a high school degree or less, half reported difficulty understanding spoken information, and nearly half sometimes need help reading medical materials. Patients indicated notes provided an opportunity to learn details of their condition and facilitated information sharing - strengthening information exchange. Reading notes enabled self-management through motivation, prompting information seeking, and reminding them of action steps. Patients reacted positively to statements suggesting the provider listened to them, saw them as a person, and was attentive to details, which fostered the relationship. Most patients reacted negatively to medical terminology, incorrect information, and wording that was perceived as disparaging. CONCLUSIONS: Sharing clinic notes with patients can promote information exchange, enable self-management, and strengthen the patient-provider relationship. PRACTICE IMPLICATIONS: Incorporating patients' recommendations for writing notes could strengthen the benefits of sharing notes.

Preferences for COVID-19 vaccination information and location: Associations with vaccine hesitancy, race and ethnicity.

This study examined the association between preferences for being informed about the COVID-19 vaccine and where to receive it with vaccination intent and race/ethnicity. We conducted an online survey, oversampling Black and Latino panel members. The 1668 participants were 53.2% female, 34.8% White, 33.3% Black, and 31.8% Latino. Participants who were vaccine hesitant (answered "not sure" or "no" to vaccination intent) were more likely to prefer a conversation with their doctor compared to those who answered "yes" (25.0% and 23.4% vs 7.8%, P < .001, respectively). Among participants who responded "not sure", 61.8% prefer to be vaccinated at a doctor's office, compared with 35.2% of those who responded "yes" (P < .001). Preferred location differed by race/ethnicity (P < .001) with 67.6% of Black "not sure" participants preferring a doctor's office compared to 60.2% of Latino and 54.9% of White "not sure" participants. These findings underscore the need to integrate healthcare providers into COVID-19 vaccination programs.

The Association of Nursing Home Characteristics and Quality with Adverse Events After a Hospitalization.

BACKGROUND/OBJECTIVES: We previously found high rates of adverse events (AEs) for long-stay nursing home residents who return to the facility after a hospitalization. Further evidence about the association of AEs with aspects of the facilities and their quality may support quality improvement efforts directed at reducing risk. DESIGN: Prospective cohort analysis. SETTING AND PARTICIPANTS: 32 nursing homes in the New England states. A total of 555 long-stay residents contributed 762 returns from hospitalizations. METHODS: We measured the association between AEs developing in the 45 days following discharge back to long-term care and characteristics of the nursing homes including bed size, ownership, 5-star quality ratings, registered nurse and nursing assistant hours, and the individual Centers for Medicare & Medicaid Services (CMS) quality indicators. We constructed Cox proportional hazards models controlling for individual resident characteristics that were previously found associated with AEs. RESULTS: We found no association of AEs with most nursing home characteristics, including 5-star quality ratings and the composite quality score. Associations with individual quality indicators were inconsistent and frequently not monotonic. Several individual quality indicators were associated with AEs; the highest tertile of percentage of residents with depression (4%-25%) had a hazard ratio (HR) of 1.65 [95% confidence interval (CI) 1.16, 2.35] and the highest tertile of the percentage taking antipsychotic medications (18%-35%) had an HR of 1.58 (CI 1.13, 2.21). The percentage of residents needing increased assistance with activities of daily living was statistically significant but not monotonic; the middle tertile (13% to <20%) had an HR of 1.69 (CI 1.16, 2.47). CONCLUSIONS AND IMPLICATIONS: AEs occurring during transitions between nursing homes and hospitals are not explained by the characteristics of the facilities or summary quality scores. Development of risk reduction approaches requires assessment of processes and quality beyond the current quality measures.

Attitudes Toward a Potential SARS-CoV-2 Vaccine : A Survey of U.S. Adults.

BACKGROUND: Coronavirus disease 2019 (COVID-19) has rapidly instigated a global pandemic. Vaccine development is proceeding at an unprecedented pace. Once available, it will be important to maximize vaccine uptake and coverage. OBJECTIVE: To assess intent to be vaccinated against COVID-19 among a representative sample of adults in the United States and identify predictors of and reasons for vaccine hesitancy. DESIGN: Cross-sectional survey, fielded from 16 through 20 April 2020. SETTING: Representative sample of adults residing in the United States. PARTICIPANTS: Approximately 1000 adults drawn from the AmeriSpeak probability-based research panel, covering approximately 97% of the U.S. household population. MEASUREMENTS: Intent to be vaccinated against COVID-19 was measured with the question, "When a vaccine for the coronavirus becomes available, will you get vaccinated?" Response options were "yes," "no," and "not sure." Participants who responded "no" or "not sure" were asked to provide a reason. RESULTS: A total of 991 AmeriSpeak panel members responded. Overall, 57.6% of participants (n = 571) intended to be vaccinated, 31.6% (n = 313) were not sure, and 10.8% (n = 107) did not intend to be vaccinated. Factors independently associated with vaccine hesitancy (a response of "no" or "not sure") included younger age, Black race, lower educational attainment, and not having received the influenza vaccine in the prior year. Reasons for vaccine hesitancy included vaccine-specific concerns, a need for more information, antivaccine attitudes or beliefs, and a lack of trust. LIMITATIONS: Participants' intent to be vaccinated was explored before a vaccine was available and when the pandemic was affecting a narrower swath of the United States. Questions about specific information or factors that might increase vaccination acceptance were not included. The survey response rate was 16.1%. CONCLUSION: This national survey, conducted during the coronavirus pandemic, revealed that approximately 3 in 10 adults were not sure they would accept vaccination and 1 in 10 did not intend to be vaccinated against COVID-19. Targeted and multipronged efforts will be needed to increase acceptance of a COVID-19 vaccine when one becomes available. PRIMARY FUNDING SOURCE: Agency for Healthcare Research and Quality.

Characteristics of Long-Term Care Residents That Predict Adverse Events after Hospitalization.

BACKGROUND/OBJECTIVES: Adverse events (AEs) occur frequently in long-term care (LTC) residents transitioning from the hospital back to an LTC facility. Measuring the association between resident characteristics and AEs can inform AE risk reduction strategies. DESIGN: Prospective cohort analysis. SETTING: A total of 32 nursing homes from six New England states. PARTICIPANTS: A total of 555 LTC residents contributing 762 transitions from the hospital back to LTC. MEASUREMENTS: We measured the association between all AEs and preventable AEs developing in the 45 days following discharge back to LTC and demographic variables, hospital length of stay (LOS), Charlson Comorbidity Index (CCI) (0-1, 2-3, 4-5 and ≥6), dependency in activities of daily living (ADLs) using the Minimum Data Set Long Form Scale (in quintiles 0-12, 13-15, 16, 17-18, and ≥19), and number of regularly scheduled medications (0-9, 10-13, 14-17, and ≥18). To understand the independent association of each resident characteristic with AEs and preventable AEs, we constructed multiple Cox proportional hazards models. RESULTS: There were 283 discharges with one or more AEs and 212 with preventable AEs. Characteristics independently associated with higher risk of an AE included hospital LOS 9 or more days (hazard ratio [HR] = 1.49; 95% confidence interval [CI] = 1.02-2.17); CCI of 4 to 5 (HR = 1.74; 95% CI = 1.13-2.67) or 6 or higher (HR = 1.58; 95% CI = 1.01-2.46); 18 or more regularly scheduled medications (HR = 1.53; 95% CI = 1.07-2.18); and 19 and above on ADL dependency (HR = 1.78; 95% CI = 1.21-2.62). Results from models with preventable AEs were similar to those with all AEs. CONCLUSION: Increased LOS, higher comorbidity burden, greater dependency in ADLs, and polypharmacy were the resident characteristics most strongly associated with risk of AEs and preventable AEs. We recommend heightened vigilance in the care of LTC residents with these characteristics transitioning back to LTC. We also recommend research to assess strategies to reduce the risk of AEs.

We Want to Know-A Mixed Methods Evaluation of a Comprehensive Program Designed to Detect and Address Patient-Reported Breakdowns in Care.

BACKGROUND: Patients have important insights into care experiences, including breakdowns, but are often reluctant to speak up. The We Want to Know (WWTK) program was designed to make it easy for hospitalized patients to speak up about breakdowns in care and receive a response. METHODS: The WWTK program was implemented from June 2014 through May 2017 at a large, community hospital in Baltimore. Core program features include (1) multiple channels for patients to report breakdowns, (2) campaign materials to increase patient awareness of the WWTK program, and (3) a specialist to facilitate resolution of breakdowns. This program was evaluated using mixed methods to assess the frequency and type of reported breakdowns, patient awareness of the program, and stakeholder perspectives. RESULTS: WWTK specialists interviewed 4,676 patients; 822 (17.6%) reported a breakdown in care. Of these, 313 (38.1%) had not spoken with anyone at the hospital about the breakdown, and 547 (66.5%) described associated harm. There were also 55 patient-initiated reports to WWTK; 41 (74.5%) of these reported a care breakdown. Patients had not spoken with anyone at the hospital in 12 (29.3%) patient-initiated cases; 38 (92.7%) described associated harm. Hospital stakeholders found the level of detail and timeliness of reports to be helpful. CONCLUSION: Active outreach to hospitalized patients detects substantially more breakdowns in care than patient-initiated reporting. Both approaches identify breakdowns that are consequential to patients and provide opportunities to respond to individual patients.

Identifying monoclonal gammopathy of undetermined significance in electronic health data.

PURPOSE: Monoclonal gammopathy of undetermined significance (MGUS) is a prevalent yet largely asymptomatic precursor to multiple myeloma. Patients with MGUS must undergo regular surveillance and testing, with few known predictors of progression. We developed an algorithm to identify MGUS patients in electronic health data to facilitate large-scale, population-based studies of this premalignant condition. METHODS: We developed a four-step algorithm using electronic health record and health claims data from men and women aged 50 years or older receiving care from a large, multispecialty medical group between 2007 and 2015. The case definition required patients to have at least two MGUS ICD-9 diagnosis codes within 12 months, at least one serum and/or urine protein electrophoresis and one immunofixation test, and at least one in-office hematology/oncology visit. Medical charts for selected cases were abstracted then adjudicated independently by two physicians. We assessed algorithm validity by positive predictive value (PPV). RESULTS: We identified 833 people with at least two MGUS diagnosis codes; 429 (52%) met all four algorithm criteria. We randomly selected 252 charts for review, including 206 from patients meeting all four algorithm criteria. The PPV for the 206 algorithm-identified charts was 76% (95% CI, 70%-82%). Among the 49 cases deemed to be false positives (24%), 33 were judged to have multiple myeloma or another lymphoproliferative condition, such as lymphoma. CONCLUSIONS: We developed a simple algorithm that identified MGUS cases in electronic health data with reasonable accuracy. Inclusion of additional steps to eliminate cases with malignant disease may improve algorithm performance.

Communicating with patients about breakdowns in care: a national randomised vignette-based survey.

BACKGROUND: Many patients are reluctant to speak up about breakdowns in care, resulting in missed opportunities to respond to individual patients and improve the system. Effective approaches to encouraging patients to speak up and responding when they do are needed. OBJECTIVE: To identify factors which influence speaking up, and to examine the impact of apology when problems occur. DESIGN: Randomised experiment using a vignette-based questionnaire describing 3 care breakdowns (slow response to call bell, rude aide, unanswered questions). The role of the person inquiring about concerns (doctor, nurse, patient care specialist), extent of the prompt (invitation to patient to share concerns) and level of apology were varied. SETTING: National online survey. PARTICIPANTS: 1188 adults aged ≥35 years were sampled from an online panel representative of the entire US population, created and maintained by GfK, an international survey research organisation; 65.5% response rate. MAIN OUTCOMES AND MEASURES: Affective responses to care breakdowns, intent to speak up, willingness to recommend the hospital. RESULTS: Twice as many participants receiving an in-depth prompt about care breakdowns would (probably/definitely) recommend the hospital compared with those receiving no prompt (18.4% vs 8.8% respectively (p=0.0067)). Almost three times as many participants receiving a full apology would (probably/definitely) recommend the hospital compared with those receiving no apology (34.1% vs 13.6% respectively ((p<0.0001)). Feeling upset was a strong determinant of greater intent to speak up, but a substantial number of upset participants would not 'definitely' speak up. A more extensive prompt did not result in greater likelihood of speaking up. The inquirer's role influenced speaking up for two of the three breakdowns (rudeness and slow response). CONCLUSIONS: Asking about possible care breakdowns in detail, and offering a full apology when breakdowns are reported substantially increases patients' willingness to recommend the hospital.

Positive deviance approaches to improving vaccination coverage rates within healthcare systems: a systematic review.

Aim: Our objective was to systematically review the use of the positive deviance approach to identify strategies to improve vaccination coverage rates. Materials & methods: We searched English language articles in Medline, Embase, Cochrane Library, CINAHL and PsycINFO without any date restrictions on 4 October 2017. We compiled a list of all strategies and evaluated the quality of these studies using the QATSDD tool. Results: After a review of 241 citations, we included eight studies. These studies focused on a wide variety of vaccines and settings. Core strategies that support vaccine uptake include the importance of tailoring and targeting in both messaging and delivery of vaccines and tracking delivery of vaccines. Patient and provider education, reminders, feedback loops, community collaborations, immunization registries and use of a medical home were also identified as other strategies. Conclusion: Our findings highlight several useful core strategies, which can be used to promote vaccination coverage. PROSPERO: CRD42017078221.

Adverse Events in Long-term Care Residents Transitioning From Hospital Back to Nursing Home.

IMPORTANCE: Transition from hospital to nursing home is a high-risk period for adverse events in long-term care (LTC) residents. Adverse events include harms from medical care, including failure to provide appropriate care. OBJECTIVE: To report the incidence, type, severity, and preventability of adverse events in LTC residents transitioning from hospital back to the same LTC facility. DESIGN, SETTING, AND PARTICIPANTS: Prospective cohort study of LTC residents discharged from hospital back to LTC from March 1, 2016, to December 31, 2017, and followed up for 45 days. In a random sample of 32 nursing homes located in 6 New England states, 555 LTC residents were selected, contributing 762 transitions from hospital back to the same LTC facility. MAIN OUTCOMES AND MEASURES: The main outcome was an adverse event within the 45-day period after transition from hospital back to nursing home. Trained nurse abstractors reviewed nursing home records for the period, and then 2 physicians independently reviewed each potential adverse event to determine whether harm occurred and to characterize the type, severity, and preventability of each event. When reviewers disagreed, they met to reach consensus. RESULTS: Of the 555 individual residents, 365 (65.6%) were female, and the mean (SD) age at the time of discharge was 82.2 (11.5) years. Five hundred twenty (93.7%) were non-Hispanic white, 21 (3.8%) were non-Hispanic black, 9 (1.6%) were Hispanic, and 5 (0.9%) were of other non-Hispanic race/ethnicity. In the cohort, there were 379 adverse events among 762 discharges. One hundred ninety-seven events (52.0%) related to resident care, with pressure ulcers, skin tears, and falls with injury representing the most common types of events in this category. Health care-acquired infections (108 [28.5%]) and adverse drug events (64 [16.9%]) were the next most common. One hundred ninety-eight (52.2%) adverse events were characterized as less serious. However, 145 (38.3%) events were deemed serious, 28 (7.4%) life-threatening, and 8 (2.1%) fatal. In terms of preventability, 267 (70.4%) adverse events were found to be preventable or ameliorable, with less serious events more often considered preventable or ameliorable (146 [73.7%]) compared with more severe events (121 [66.9%]). In addition, resident care-related adverse events such as fall with injury, skin tear, and pressure ulcer were more commonly deemed preventable (173 of 197 [87.8%]) compared with adverse drug events (39 of 64 [60.9%]) or health care-acquired infections (49 of 108 [45.4%]). CONCLUSIONS AND RELEVANCE: Adverse events developed in nearly 4 of 10 of discharges from hospital back to LTC. Most were preventable or ameliorable. Standardized reporting of events and better coordination and information transfer across settings are potential ways to prevent adverse events in LTC residents.

We want to know: patient comfort speaking up about breakdowns in care and patient experience.

OBJECTIVE: To assess patient comfort speaking up about problems during hospitalisation and to identify patients at increased risk of having a problem and not feeling comfortable speaking up. DESIGN: Cross-sectional study. SETTING: Eight hospitals in Maryland and Washington, District of Columbia. PARTICIPANTS: Patients hospitalised at any one of eight hospitals who completed the Hospital Consumer Assessment of Healthcare Providers and Systems survey postdischarge. MAIN OUTCOME MEASURES: Response to the question 'How often did you feel comfortable speaking up if you had any problems in your care?' grouped as: (1) no problems during hospitalisation, (2) always felt comfortable speaking up and (3) usually/sometimes/never felt comfortable speaking up. RESULTS: Of 10 212 patients who provided valid responses, 4958 (48.6%) indicated they had experienced a problem during hospitalisation. Of these, 1514 (30.5%) did not always feel comfortable speaking up. Predictors of having a problem during hospitalisation included age, health status and education level. Patients who were older, reported worse overall and mental health, were admitted via the Emergency Department and did not speak English at home were less likely to always feel comfortable speaking up. Patients who were not always comfortable speaking up provided lower ratings of nurse communication (47.8 vs 80.4; p<0.01), physician communication (57.2 vs 82.6; p<0.01) and overall hospital ratings (7.1 vs 8.7; p<0.01). They were significantly less likely to definitely recommend the hospital (36.7% vs 71.7 %; p<0.01) than patients who were always comfortable speaking up. CONCLUSIONS: Patients frequently experience problems in care during hospitalisation and many do not feel comfortable speaking up. Creating conditions for patients to be comfortable speaking up may result in service recovery opportunities and improved patient experience. Such efforts should consider the impact of health literacy and mental health on patient engagement in patient-safety activities.

Keeping the patient in the center: Common challenges in the practice of shared decision making.

OBJECTIVE: To examine situations where shared decision making (SDM) in practice does not achieve the goal of a patient-centered decision. METHODS: We explore circumstances in which elements necessary to realize SDM - patient readiness to participate and understanding of the decision - are not present. We consider the influence of contextual factors on decision making. RESULTS: Patients' preference and readiness for participation in SDM are influenced by multiple interacting factors including the patient's comprehension of the decision, their emotional state, the strength of their relationship with the clinician, and the nature of the decision. Uncertainty often inherent in information can lead to misconceptions and ill-formed opinions that impair patients' understanding. In combination with cognitive biases, these factors may result in decisions that are incongruent with patients' preferences. The impact of suboptimal understanding on decision making may be augmented by the context. CONCLUSIONS: There are circumstances in which basic elements required for SDM are not present and therefore the clinician may not achieve the goal of a patient-centered decision. PRACTICE IMPLICATIONS: A flexible and tailored approach that draws on the full continuum of decision making models and communication strategies is required to achieve the goal of a patient-centered decision.

Using New Technologies for Time Diary Data Collection: Instrument Design and Data Quality Findings from a Mixed-Mode Pilot Survey.

Recent years have witnessed a steady growth of time-use research, driven by the increased research and policy interest in population activity patterns and their associations with long-term outcomes. There is recent interest in moving beyond traditional paper-administered time diaries to use new technologies for data collection in order to reduce respondent burden and administration costs, and to improve data quality. This paper presents two novel diary instruments that were employed by a large-scale multi-disciplinary cohort study in order to obtain information on the time allocation of adolescents in the United Kingdom. A web-administered diary and a smartphone app were created, and a mixed-mode data collection approach was followed: cohort members were asked to choose between these two modes, and those who were unable or refused to use the web/app modes were offered a paper diary. Using data from a pilot survey of 86 participants, we examine diary data quality indicators across the three modes. Results suggest that the web and app modes yield an overall better time diary data quality than the paper mode, with a higher proportion of diaries with complete activity and contextual information. Results also show that the web and app modes yield a comparable number of activity episodes to the paper mode. These results suggest that the use of new technologies can improve diary data quality. Future research using larger samples should systematically investigate selection and measurement effects in mixed-mode time-use survey designs.