Implementation of An Advance Care Planning Intervention in Dialysis Clinics.

Rationale & Objective: Sharing Patient's Illness Representations to Increase Trust (SPIRIT) is an evidence-based advance care planning intervention targeting dialysis patients and their surrogate decision-makers. To address SPIRIT's implementation potential, we report on a process evaluation in our recently completed five-state cluster-randomized trial.

Study Design: A descriptive study of implementation within a randomized clinical trial.

Laxative use in adults with intellectual disabilities: development of prescribing guidelines.

Background: Constipation is overrepresented in people with intellectual disabilities. Around 40% of people with intellectual disabilities who died prematurely were prescribed laxatives. A quarter of people with intellectual disabilities are said to be on laxatives.

Pandemic Effects on Stability of End-of-Life Preferences and Patient-Surrogate Dyad Congruence.

Context: Whether a largescale disaster alters people's previous decisions about their end-of-life care is unknown.

Objectives: We examined the effects of a disaster, the COVID-19 pandemic, on stability of end-of-life care preferences among dialysis patients and on patient-surrogate goals-of-care congruence.

Methods: We used a natural experimental design to examine goals-of-care preferences pre- and postexposure to the pandemic during a pragmatic trial testing SPIRIT (sharing patient's illness representations to increase trust), an evidence-based advance care planning (ACP) intervention.

Measures of Patient and Surrogate Preparedness for End-of-Life Decision-Making.

Context: Reliable and valid measures are critical in accurately assessing outcomes of advance care planning interventions (ACP) for end-of-life (EOL) decision-making.

Objectives: To develop measures of preparedness for EOL decision-making for patients with end-stage renal disease and their surrogates (an exemplar population).

Methods: In this 3-phase study, Phases 1 and 2 included a cross-discipline concept analysis of the preparedness construct, item generation for patient and surrogate scales (82 items), evaluation of content validity and readability, cognitive interviewing, and item reduction.

Effectiveness of an Advance Care Planning Intervention in Adults Receiving Dialysis and Their Families: A Cluster Randomized Clinical Trial.

Importance: Evidence of effectiveness of advance care planning (ACP) strategies for patients receiving dialysis and their families is needed.

Objectives: To test the effectiveness of an ACP intervention to prepare patients and their surrogates for end-of-life (EOL) decision-making and to improve surrogate bereavement outcomes.

Design, Setting, And Participants: This cluster randomized clinical trial, An Effectiveness-Implementation Trial of SPIRIT (Sharing Patients' Illness Representations to Increase Trust) in ESRD, was conducted from December 2017 to March 2023 and included 42 dialysis clinics in 5 US states (Georgia, New Mexico, North Carolina, Pennsylvania, and Virginia) randomized to provide intervention or usual care.

Determinants of COVID-19 Vaccine Acceptance and Uptake in a Transborder Population at the Mexico-Guatemala Border, September-November 2021.

Assessing COVID-19 vaccination uptake of transborder populations is critical for informing public health policies. We conducted a probability (time-venue) survey of adults crossing from Mexico into Guatemala from September to November 2021, with the objective of describing COVID-19 vaccination status, willingness to get vaccinated, and associated factors. The main outcomes were receipt of ≥1 dose of a COVID-19 vaccine, being fully vaccinated, and willingness to get vaccinated.

Effects of the WRITE Symptoms Interventions on Symptoms and Quality of Life Among Patients With Recurrent Ovarian Cancers: An NRG Oncology/GOG Study (GOG-0259).

Purpose: GOG-259 was a 3-arm randomized controlled trial of two web-based symptom management interventions for patients with recurrent ovarian cancer. Primary aims were to compare the efficacy of the nurse-guided (Nurse-WRITE) and self-directed (SD-WRITE) interventions to Enhanced Usual Care (EUC) in improving symptoms (burden and controllability) and quality of life (QOL).

Methods: Patients with recurrent or persistent ovarian, fallopian, or primary peritoneal cancer with 3+ symptoms were eligible for the study.

Glutathione sensitive vesicles prepared from supramolecular amphiphiles.

Glutathione (GSH) sensitive vesicles were prepared by the self-assembly of amphiphilic inclusion complexes. These novel chemically sensitive supramolecular amphiphiles are anticipated to have applications in drug delivery; the nanocarriers can protect the encapsulated cargo and release it triggered degradation in high concentrations of GSH. Additionally, the sensitivity of the vesicles to GSH indicates that the dynamic covalent disulfide bond at the vesicle surface can be used for post-modification of the nanocarrier a thiol-disulfide exchange, a strategy that can be exploited to introduce targeting moieties to increase treatment specificity.

Revisiting patient-related barriers to cancer pain management in the context of the US opioid crisis.

Patient fear of addiction is a well-documented barrier to the use of analgesic medications for cancer pain control. Over the past 2 decades in the United States, an "opioid crisis" has arisen, accompanied by risk messages delivered through news outlets, public health education, and patient-provider communication. The purpose of this study was to determine if patient-related barriers to cancer pain management-specifically, fears of addiction-and related pain outcomes (pain severity, pain interference with daily life, and adequacy of pain management) have worsened over the last 20 years.

Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT.

Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted.

Control Conditions That Are Neither Usual Care Nor No Treatment in Randomized Trials of Psychoeducational Palliative Care Interventions: A Systematic Review.

Background:: Determining intervention efficacy depends as much on the control group as on the intervention, but little attention has been given to the control condition in psychoeducational trials in palliative care.

Objectives:: To examine (1) research practice regarding control conditions that are neither usual care nor no-treatment controls in randomized trials of psychoeducational palliative care interventions and (2) the rationale and completeness of the descriptions of control conditions in trial reports.

Methods:: PubMed, EMBASE, PsycINFO, and Web of Science were searched.

Randomized controlled trial of a brief cognitive-behavioral strategies intervention for the pain, fatigue, and sleep disturbance symptom cluster in advanced cancer.

Objective: Patients receiving treatment for advanced cancer suffer significant symptom burden, including co-occurring pain, fatigue, and sleep disturbance. There is limited evidence for effective interventions targeting this common symptom cluster.

Methods: A randomized controlled trial of a brief cognitive-behavioral strategies (CBS) intervention was conducted.

A population based study of the prevalence of pain in Iceland.

Prevalence estimates of pain differ depending on how it is defined and measured and on the populations studied. It has been estimated that on a given day, as many as 30-44% of the general population experience some kind of pain. Information about the prevalence of pain in Iceland is not available.

SPIRIT advance care planning intervention in early stage dementias: An NIH stage I behavioral intervention development trial.

Unlabelled: People in the early stages of Alzheimer's disease and related dementias (ADRD) are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. In this NIH Stage I behavioral intervention development trial, we will adapt and test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with people with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. We will first adapt SPIRIT (in person) to target people with mild dementia and their surrogates through a process of modification-pretesting-refinement using stakeholders (persons with mild dementia, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconference format (SPIRIT-remote).

One-Year Linear Trajectories of Symptoms, Physical Functioning, Cognitive Functioning, Emotional Well-being, and Spiritual Well-being Among Patients Receiving Dialysis.

Background: This study evaluated 1-year linear trajectories of patient-reported dimensions of quality of life among patients receiving dialysis.

Study Design: Longitudinal observational study.

Setting & Participants: 227 patients recruited from 12 dialysis centers.

The Role of Inflammation in the Pain, Fatigue, and Sleep Disturbance Symptom Cluster in Advanced Cancer.

Context: Symptom researchers have proposed a model of inflammatory cytokine activity and dysregulation in cancer to explain co-occurring symptoms including pain, fatigue, and sleep disturbance.

Objectives: We tested the hypothesis that psychological stress accentuates inflammation and that stress and inflammation contribute to one's experience of the pain, fatigue, and sleep disturbance symptom cluster (symptom cluster severity, symptom cluster distress) and its impact (symptom cluster interference with daily life, quality of life).

Methods: We used baseline data from a symptom cluster management trial.

SPIRIT trial: A phase III pragmatic trial of an advance care planning intervention in ESRD.

Unlabelled: Advance care planning (ACP) is a central tenet of dialysis care, but the vast majority of dialysis patients report never engaging in ACP discussions with their care providers. Over the last decade, we have developed and iteratively tested SPIRIT (Sharing Patient's Illness Representation to Increase Trust), a theory-based, patient- and family-centered advance care planning intervention. SPIRIT is a six-step, two-session, face-to-face intervention to promote cognitive and emotional preparation for end-of-life decision making for patients with ESRD and their surrogates.

The effectiveness of the Pain Resource Nurse Program to improve pain management in the hospital setting: A cluster randomized controlled trial.

Background: The Pain Resource Nurse program is a widely disseminated, evidence-based, nursing staff development program, designed to improve pain management in hospitals. The program has shown promising results, but has never been tested with a rigorous research design.

Objectives: Our objective was to test the effectiveness of the Pain Resource Nurse program.

A Family of Amphiphilic Cyclodextrin Liquid Crystals Governed by Dipole-Dipole Interactions.

A novel family of amphiphilic cyclodextrin(CD)-based liquid crystals that bear O-acetylated oligoethylene glycol chains at the secondary face is reported. Unlike most of the previously reported liquid crystals (LC) based on chemically modified CDs, which depend on H-bonding as the primary intermolecular forces, the present CD derivatives self-assemble into highly ordered smectic liquid crystal phases via the weaker dipole-dipole intermolecular interactions. The obtained materials are found to display much improved properties such as improved thermostability, reduced clearing temperatures, and better fluidity.

Process and impact of an advance care planning intervention evaluated by bereaved surrogate decision-makers of dialysis patients.

Background: Few studies have examined the process and impact of an advance care planning intervention experienced by surrogate decision-makers of dialysis patients.

Aim: To explore the perspectives of the bereaved surrogates of dialysis patients on the process and impact of an advance care planning intervention and to compare the perceived impacts of the intervention between African Americans and Whites.

Design: Qualitative interviews and thematic analysis.

A SMART design to optimize treatment strategies for patient and family caregiver outcomes.

Sequential multiple randomization trial (SMART) designs are experimental designs used to identify treatment strategies that maximize targeted health outcomes. SMART designs are receiving greater attention in nursing and other health disciplines to develop multicomponent interventions that are tailored to the patient's (or family caregiver's) needs and preferences. A SMART design resembles a traditional randomized controlled trial (RCT) design in that it scientifically examines intervention effects with randomization.

Beliefs About Dysmenorrhea and Their Relationship to Self-Management.

Dysmenorrhea is highly prevalent and is the leading cause of work and school absences among women of reproductive age. However, self-management of dysmenorrhea is not well understood in the US, and little evidence is available on factors that influence dysmenorrhea self-management. Guided by the Common Sense Model, we examined women's representations of dysmenorrhea (beliefs about causes, symptoms, consequences, timeline, controllability, coherence, and emotional responses), described their dysmenorrhea self-management behaviors, and investigated the relationship between representations and self-management behaviors.

Coping With Pain Severity, Distress, and Consequences in Women With Ovarian Cancer.

Background: Self-regulation can be useful in understanding pain management efforts in women with ovarian cancer. Self-regulation is a parallel process of problem- and emotion-focused coping; problem-focused coping involves efforts aimed at solving/reducing the problem directly, whereas emotion-focused coping is aimed at managing negative emotions.

Objectives: The aims of this study were to describe the types of problem- and emotion-focused coping strategies used to manage pain severity, distress, and consequences and to evaluate whether there was evidence of parallel processing (ie, use of a combination of both problem- and emotion-focused strategies).

Determining Consistency of Surrogate Decisions and End-of-Life Care Received with Patient Goals-of-Care Preferences.

Background: Care consistent with preferences is the goal of advance care planning (ACP). However, comparing written preferences to actual end-of-life care may not capture consistency of care with preferences.

Objective: We evaluated four additional types of consistency, using prospective data on written preferences and active clinical decision making by patients and their surrogates.