Evaluating the Balance Between Privacy and Access in Digital Information Sharing.

OBJECTIVES: Access to personal health records in an ICU by persons involved in the patient's care (referred to broadly as "family members" below) has the potential to increase engagement and reduce the negative psychologic sequelae of such hospitalizations. Currently, little is known about patient preferences for information sharing with a designated family member in the ICU. We sought to understand the information-sharing preferences of former ICU patients and their family members and to identify predictors of information-sharing preferences. DESIGN: We performed an internet survey that was developed by a broad, multidisciplinary team of stakeholders. Formal pilot testing of the survey was conducted prior to internet survey administration to study subjects. SETTING: Internet survey. SUBJECTS: Subjects included English-speaking adults who had an ICU experience or a family member with ICU experience between 2013 and 2016. We used panel sampling to ensure an ethnically representative sample of the U.S. population. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: One thousand five hundred twenty surveys were submitted, and 1,470 were included in analysis. The majority of respondents (93.6%) stated that they would want to share present and past medical history, either all or that related to their ICU stay, with a designated family member of their choosing. The majority (79%) would also want their designated family member to be able to access that information from a home computer. Although most respondents preferred to share all types of information, they indicated varying levels of willingness to share specific types of more sensitive information. Information-sharing preferences did not differ by age, sex, ethnicity, or type of prior experience in the ICU (i.e., patient or family member). CONCLUSIONS: In the context of an ICU admission, sharing personal health information with a person of the patient's choosing appears desirable for most patients and family members. Policies and implementation of regulations should take this into consideration.

Depression and Change in Caregiver Burden Among Family Members of Intensive Care Unit Survivors.

BACKGROUND: Family members of patients in intensive care units may experience psychological distress and substantial caregiver burden. OBJECTIVE: To evaluate whether change in caregiver burden from intensive care unit admission to 3-month follow-up is associated with caregiver depression at 3 months. METHODS: Caregiver burden was assessed at enrollment and 3 months later, and caregiver depression was assessed at 3 months. Depression was measured with the Hospital Anxiety and Depression Score. The primary analysis was the association between depression at 3 months and change in caregiver burden, controlling for a history of caregiver depression. RESULTS: One hundred one participants were enrolled; 65 participants had a surviving loved one and completed 3-month follow-up. At 3-month follow-up, 12% of participants met criteria for depression. Increased caregiver burden over time was significantly associated with depression at follow-up (Fisher exact test, P = .004), although this association was not significant after controlling for self-reported history of depression at baseline (Cochran-Mantel-Haenszel test, P = .23). CONCLUSIONS: Family members are increasingly recognized as a vulnerable population susceptible to negative psychological outcomes after a loved one's admission to the intensive care unit. In this small sample, no significant association was found between change in caregiver burden and depression at 3 months after controlling for baseline depression.

Impact of Critical Illness on Resource Utilization: A Comparison of Use in the Year Before and After ICU Admission.

OBJECTIVES: Increasingly, patients admitted to an ICU survive to hospital discharge; many with ongoing medical needs. The full impact of an ICU admission on an individual's resource utilization and survivorship trajectory in the United States is not clear. We sought to compare healthcare utilization among ICU survivors in each year surrounding an ICU admission. DESIGN: Retrospective cohort of patients admitted to an ICU during one calendar year (2012) in a multipayer healthcare system. We assessed mortality, hospital readmissions (categorized by ambulatory care sensitive conditions and emergency department), and outpatient visits. We compared the proportion of patients with visits during the pre-ICU year versus the post-ICU year. PATIENTS: People admitted to an Intermountain healthcare ICU for greater than 48 hours in the year 2012 INTERVENTIONS:: None. MEASUREMENTS AND MAIN RESULTS: Among 4,074 ICU survivors, 45% had increased resource utilization. Readmission rates at 30-day, 90-day, and 1-year were 15%, 26%, and 43%. The proportion of patients with a hospital admission increased significantly in the post-ICU period (43% vs 29%; p < 0.001). Of patients with a readmission in the post-ICU period, 24% were ambulatory care sensitive condition. Patients with increased utilization differed by socioeconomic status, insurance type, and severity of illness. Sixteen percent of patients had either an emergency department or inpatient admission, but no outpatient visits during the post-ICU period. CONCLUSIONS: An ICU admission is associated with increased resource utilization including hospital readmissions, with many due to an ambulatory care sensitive condition. Lower socioeconomic status and higher severity of illness are associated with increased resource utilization. After an ICU visit patients seem to use hospital resources over outpatient resources. Interventions to improve and coordinate care after ICU discharge are needed.

Enablers and Barriers to Implementing ICU Follow-Up Clinics and Peer Support Groups Following Critical Illness: The Thrive Collaboratives.

OBJECTIVES: Data are lacking regarding implementation of novel strategies such as follow-up clinics and peer support groups, to reduce the burden of postintensive care syndrome. We sought to discover enablers that helped hospital-based clinicians establish post-ICU clinics and peer support programs, and identify barriers that challenged them. DESIGN: Qualitative inquiry. The Consolidated Framework for Implementation Research was used to organize and analyze data. SETTING: Two learning collaboratives (ICU follow-up clinics and peer support groups), representing 21 sites, across three continents. SUBJECTS: Clinicians from 21 sites. MEASUREMENT AND MAIN RESULTS: Ten enablers and nine barriers to implementation of "ICU follow-up clinics" were described. A key enabler to generate support for clinics was providing insight into the human experience of survivorship, to obtain interest from hospital administrators. Significant barriers included patient and family lack of access to clinics and clinic funding. Nine enablers and five barriers to the implementation of "peer support groups" were identified. Key enablers included developing infrastructure to support successful operationalization of this complex intervention, flexibility about when peer support should be offered, belonging to the international learning collaborative. Significant barriers related to limited attendance by patients and families due to challenges in creating awareness, and uncertainty about who might be appropriate to attend and target in advertising. CONCLUSIONS: Several enablers and barriers to implementing ICU follow-up clinics and peer support groups should be taken into account and leveraged to improve ICU recovery. Among the most important enablers are motivated clinician leaders who persist to find a path forward despite obstacles.

Association of hospice utilization and publicly reported outcomes following hospitalization for pneumonia or heart failure: a retrospective cohort study.

BACKGROUND: The Center for Medicare and Medicaid Services (CMS) and the Hospital Quality Alliance began collecting and reporting United States hospital performance in the treatment of pneumonia and heart failure in 2008. Whether the utilization of hospice might affect CMS-reported mortality and readmission rates is not known. METHODS: Hospice utilization (mean days on hospice per decedent) for 2012 from the Dartmouth Atlas (a project of the Dartmouth Institute that reports a variety of public health and policy-related statistics) was merged with hospital-level 30-day mortality and readmission rates for pneumonia and heart failure from CMS. The association between hospice use and outcomes was analyzed with multivariate quantile regression controlling for quality of care metrics, acute care bed availability, regional variability and other measures. RESULTS: 2196 hospitals reported data to both CMS and the Dartmouth Atlas in 2012. Higher rates of hospice utilization were associated with lower rates of 30-day mortality and readmission for pneumonia but not for heart failure. Higher quality of care was associated with lower rates of mortality for both pneumonia and heart failure. Greater acute care bed availability was associated with increased readmission rates for both conditions (p < 0.05 for all). CONCLUSIONS: Higher rates of hospice utilization were associated with lower rates of 30-day mortality and readmission for pneumonia as reported by CMS. While causality is not established, it is possible that hospice referrals might directly affect CMS outcome metrics. Further clarification of the relationship between hospice referral patterns and publicly reported CMS outcomes appears warranted.