Variability of Prognostic Communication in Critically Ill Neurologic Patients: A Pilot Multicenter Mixed-Methods Study.

Importance: Withdrawal-of-life-sustaining treatments (WOLST) rates vary widely among critically ill neurologic patients (CINPs) and cannot be solely attributed to patient and family characteristics. Research in general critical care has shown that clinicians prognosticate to families with high variability. Little is known about how clinicians disclose prognosis to families of CINPs, and whether any associations exist with WOLST.

A Pilot Randomized Trial of an Interactive Web-based Tool to Support Surrogate Decision Makers in the Intensive Care Unit.

Breakdowns in clinician-family communication in intensive care units (ICUs) are common, yet there are no easily scaled interventions to prevent this problem. To assess the feasibility, usability, acceptability, and perceived effectiveness of a communication intervention that pairs proactive family meetings with an interactive, web-based tool to help surrogates prepare for clinician-family meetings. We conducted a two-arm, single-blind, patient-level randomized trial comparing the Family Support Tool with enhanced usual care in two ICUs in a tertiary-care hospital.

Protocol for a randomised trial of an interprofessional team-delivered intervention to support surrogate decision-makers in ICUs.

Introduction: Although shortcomings in clinician-family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution.

Methods And Analysis: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania.

Developing the family support tool: An interactive, web-based tool to help families navigate the complexities of surrogate decision making in ICUs.

Introduction: Although family members of incapacitated, critically ill patients often struggle in the role of surrogate decision maker, there are no low-cost, easily-scaled interventions to address this problem.

Aim Of The Study: To develop and pilot-test the Family Support Tool, an interactive, web-based tool to help individuals navigate the complexities of surrogate decision making in ICUs.

Material And Methods: We used a mixed methods, user-centered process to create the Family Support Tool, including: 1) creation of a preliminary design by an expert panel; 2) engagement of a key stakeholder panel to iteratively refine the preliminary design; 3) user testing of a low-fidelity prototype of the tool by 6 former ICU surrogates; 4) creation of a web-based prototype; and 5) user testing of the web-based prototype with 14 surrogates and ICU physicians, including semi-structured interviews and quantitative measurement of usability, acceptability, and perceived effectiveness.

A Multicenter Study of the Causes and Consequences of Optimistic Expectations About Prognosis by Surrogate Decision-Makers in ICUs.

Objectives: Optimistic expectations about prognosis by surrogate decision-makers in ICUs are common, but there are few data about the causes and clinical consequences. Our objective was to determine the causes of optimistic expectations about prognosis among surrogates and whether it is associated with more use of life support at the end of life.

Design: Prospective, multicenter cohort study from 2009 to 2012.

Protocol and Fidelity Monitoring Plan for Four Supports. A Multicenter Trial of an Intervention to Support Surrogate Decision Makers in Intensive Care Units.

Individuals acting as surrogate decision makers for critically ill patients frequently struggle in this role and experience high levels of long-term psychological distress. Prior interventions designed to improve the sharing of information by the clinical team with surrogate decision makers have demonstrated little effect on surrogates' outcomes or clinical decisions. In this report, we describe the study protocol and corresponding intervention fidelity monitoring plan for a multicenter randomized clinical trial testing the impact of a multifaceted surrogate support intervention (Four Supports) on surrogates' psychological distress, the quality of decisions about goals of care, and healthcare use.

A Randomized Trial of a Family-Support Intervention in Intensive Care Units.

Background: Surrogate decision makers for incapacitated, critically ill patients often struggle with decisions related to goals of care. Such decisions cause psychological distress in surrogates and may lead to treatment that does not align with patients' preferences.

Methods: We conducted a stepped-wedge, cluster-randomized trial involving patients with a high risk of death and their surrogates in five intensive care units (ICUs) to compare a multicomponent family-support intervention delivered by the interprofessional ICU team with usual care.

Key stakeholders' perceptions of the acceptability and usefulness of a tablet-based tool to improve communication and shared decision making in ICUs.

Purpose: Although barriers to shared decision making in intensive care units are well documented, there are currently no easily scaled interventions to overcome these problems. We sought to assess stakeholders' perceptions of the acceptability, usefulness, and design suggestions for a tablet-based tool to support communication and shared decision making in ICUs.

Methods: We conducted in-depth semi-structured interviews with 58 key stakeholders (30 surrogates and 28 ICU care providers).

Longitudinal associations of depressive symptoms and pain with quality of life in patients receiving chronic hemodialysis.

Depressive symptoms and pain are common in patients on chronic hemodialysis (HD), yet their associations with quality of life (QOL) are not fully understood. We sought to characterize the longitudinal associations of these symptoms with QOL. As part of a trial comparing two symptom management strategies in patients receiving chronic HD, we assessed depressive symptoms using the Patient Health Questionnaire-9 (PHQ-9), and pain using the Short Form McGill Pain Questionnaire (SF-MPQ) monthly over 24 months.

Associations of depressive symptoms and pain with dialysis adherence, health resource utilization, and mortality in patients receiving chronic hemodialysis.

Background And Objectives: Depressive symptoms and pain are common in patients receiving chronic hemodialysis, yet their effect on dialysis adherence, health resource utilization, and mortality is not fully understood. This study sought to characterize the longitudinal associations of these symptoms with dialysis adherence, emergency department (ED) visits, hospitalizations, and mortality.

Design, Setting, Participants, & Measurements: As part of a trial comparing symptom management strategies in patients receiving chronic hemodialysis, this study prospectively assessed depressive symptoms using the Patient Health Questionnaire 9, and pain using the Short-Form McGill Pain Questionnaire, monthly between 2009 and 2011.

Sexual function, activity, and satisfaction among women receiving maintenance hemodialysis.

Background And Objectives: Past studies that demonstrated that sexual dysfunction is common among women receiving chronic hemodialysis did not distinguish sexual dysfunction/difficulty from sexual inactivity. This study sought to differentiate these in order to elucidate the prevalence of true "sexual dysfunction" in this population.

Design, Setting, Participants, & Measurements: As part of a clinical trial of symptom management strategies in patients receiving chronic hemodialysis, female sexual function was prospectively assessed monthly for 6 months and quarterly thereafter using the Female Sexual Function Index, to which questions were added differentiating sexual dysfunction/difficulty from sexual inactivity.

Associations of health literacy with dialysis adherence and health resource utilization in patients receiving maintenance hemodialysis.

Background: Although limited health literacy is common in hemodialysis patients, its effects on clinical outcomes are not well understood.

Study Design: Observational study.

Setting & Participants: 260 maintenance hemodialysis patients enrolled in a randomized clinical trial of symptom management strategies from January 2009 through April 2011.

Comparison of symptom management strategies for pain, erectile dysfunction, and depression in patients receiving chronic hemodialysis: a cluster randomized effectiveness trial.

Background And Objectives: Pain, erectile dysfunction (ED), and depression are common yet frequently untreated in chronic hemodialysis patients. This study compared two management strategies for these symptoms in this patient population.

Design, Setting, Participants, & Measurements: Pain, ED, and depression were assessed monthly during an observation usual care phase.

Renal provider perceptions and practice patterns regarding the management of pain, sexual dysfunction, and depression in hemodialysis patients.

Background: Although pain, sexual dysfunction, and depression are common in patients receiving chronic hemodialysis, these symptoms frequently remain untreated. We sought to characterize renal provider perceptions and practice patterns regarding the treatment of these symptoms.

Methods: We surveyed renal providers whose patients were participating in a clinical trial of symptom management at nine hemodialysis units in southwestern Pennsylvania.

Prevalence and demographic and clinical associations of health literacy in patients on maintenance hemodialysis.

Background And Objectives: Although limited health literacy is estimated to affect over 90 million Americans and is recognized as an important public health concern, there have been few studies examining this issue in patients with chronic kidney disease. We sought to characterize the prevalence of and associations of demographic and clinical characteristics with limited health literacy in patients receiving maintenance hemodialysis.

Design, Setting, Participants, & Measurements: As part of a prospective clinical trial of symptom management strategies in 288 patients treated with chronic hemodialysis, we assessed health literacy using the Rapid Estimate of Adult Literacy in Medicine (REALM).

Subject Recruitment and Retention against Quadruple Challenges in an Intervention Trial of End-of-Life Communication.

Studies of end-of-life care face difficulties associated with enrollment and attrition. Information and exemplars can help end-of-life care researchers anticipate such difficulties and customize recruitment and retention strategies to achieve planned sample sizes. We analyzed data on recruitment and retention efforts used in a clinical trial of an end-of-life communication intervention that involved African American dialysis patients and their chosen surrogate decision makers.

Methodology of a randomized clinical trial of symptom management strategies in patients receiving chronic hemodialysis: the SMILE study.

Despite the high prevalence of pain, sexual dysfunction, and depression in patients on chronic hemodialysis, these symptoms are often unrecognized and under-treated by renal providers. This report describes the rationale and methodology of the SMILE study (Symptom Management Involving End-Stage Renal Disease), a multi-center, randomized clinical trial comparing the effectiveness of two strategies for implementing treatment for these symptoms in patients receiving chronic hemodialysis. Approximately 250 patients from nine outpatient dialysis units will participate.

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Randomized controlled trial of SPIRIT: an effective approach to preparing African-American dialysis patients and families for end of life.

This randomized controlled trial tested an intervention, Sharing Patients' Illness Representations to Increase Trust (SPIRIT), designed to enhance communication regarding end-of-life care between African Americans with end-stage renal disease (ESRD) and their chosen surrogate decision makers (N = 58 dyads). We used surveys and semi-structured interviews to determine the feasibility, acceptability, and preliminary effects of SPIRIT on patient and surrogate outcomes at 1 week and 3 months post-intervention. We also evaluated patients' deaths and surrogates' end-of-life decision making to assess surrogates' perceptions of benefits and limitations of the SPIRIT while facing end-of-life decisions.