Physician Perspectives on the Nonclinical Factors That Contribute to Decision-Making for Advanced Prostate Cancer Care: A Qualitative Study.

Introduction: Promising new treatments exist for advanced prostate cancer. Decision-making is complicated: there is minimal comparative effectiveness data; differing routes of administration, drug mechanisms-of-action and side effects; and significant price differences. These challenges contribute to variations in care and quality, treatment disparities, and lack of concordance with patient values. The aim of this study was to examine physician perspectives of factors influencing decision-making for first-line advanced prostate cancer treatments. Methods: We conducted a qualitative descriptive study of physicians who treat patients with advanced prostate cancer from 09/2021-06/2022. Participants were purposively sampled from across the United States. Results: Twenty-seven physicians participated. We identified seventeen domains and three overarching themes affecting physician decision-making for advanced prostate cancer care. The themes were: 1) physician and practice factors impact prescribing decisions, 2) health practice resource availability affects the likelihood patients will receive the recommended treatment, and that the treatment will be in-line with patients' values and 3) patient non-clinical factors influence physician decision-making, but patient values could be better incorporated into prescribing decisions. Based upon the analyses, we constructed a preliminary framework of clinician decision-making for advanced prostate cancer. Conclusions: Physicians perceive non-clinical patient, physician, and practice factors impact decision-making. These factors, therefore, must be considered when implementing programs to optimize a physician's ability to provide quality cancer care, reduce health care disparities and patient financial burden and provide patient goal-concordant care. The preliminary theoretical model of clinician decision-making for advanced prostate cancer care may also be used to inform these efforts.

Transition of Intensive Care Unit Patients and Their Families to Home After Acute Hospital Care.

Patients in the intensive care unit (ICU) increasingly are expected to eventually return home after acute hospital care. Yet transitional care for ICU patients and their families is often delayed until the patient is about to be transferred to another location or level of care. Transitions theory is a middle-range nursing theory that aims to provide guidance for safe and effective nursing care and research while an individual experiences a transition. Intensive care unit nurses are well positioned to provide ICU transitional care planning early. This article applies the transitions theory as a theoretical model to guide the study of the transition to home after acute hospital care for ICU patients and their families. This theory application can help ICU nurses provide holistic patient- and family-centered transitional care to achieve optimal outcomes by addressing the predischarge and postdischarge needs of patients and families.

Perinatal loss in Tanzania: Perspectives of maternal-child healthcare providers.

Over 98% of stillbirths and neonatal deaths occur in Low- and Middle-Income Countries, such as Tanzania. Despite the profound burden of perinatal loss in these regions, access to facility or community-based palliative and psychosocial care is poor and understudied. In this study we explore perinatal loss through the lens of front-line healthcare providers, to better understand the knowledge and beliefs that guide their engagement with bereaved families. A Knowledge Attitudes and Practices survey addressing perinatal loss in Tanzania was developed, translated into Swahili, and administered over a 4-month period to healthcare professionals working at the Kilimanjaro Christian Medical Center (KCMC). Results were entered into REDCap and analyzed in R Studio. 74 providers completed the survey. Pediatric providers saw a yearly average of 5 stillbirths and 32.7 neonatal deaths. Obstetric providers saw an average of 11.5 stillbirths and 13.12 neonatal deaths. Most providers would provide resuscitation beginning at 28 weeks gestational age. Respondents estimated that a 50% chance of survival for a newborn occurred at 28 weeks both nationally and at KCMC. Most providers felt that stillbirth and neonatal mortality were not the mother's fault (78.4% and 81.1%). However, nearly half (44.6%) felt that stillbirth reflects negatively on the woman and 62.2% agreed that women are at higher risk of abuse or abandonment after stillbirth. A majority perceived that women wanted hold their child after stillbirth (63.0%) or neonatal death (70.3%). Overall, this study found that providers at KCMC perceived that women are at greater risk of psychosocial or physical harm following perinatal loss. How women can best be supported by both the health system and their community remains unclear. More research on perinatal loss and bereavement in LMICs is needed to inform patient-level and health-systems interventions addressing care gaps unique to resource-limited or non-western settings.

Feasibility and acceptability of measuring positivity resonance in nurse-patient telehealth videoconferencing visits: A mixed-methods observational study.

AIM: To investigate the feasibility and acceptability of the training process, procedures, measures and recruitment strategies necessary for a future investigation to test the reliability and validity of using positivity resonance measures in health care encounters. BACKGROUND: Although the measurement of positivity resonance is promising, and non-participant observation is considered effective, their approaches to studying nurse-patient relationships have not been fully explored. DESIGN: A mixed-methods observational study. METHODS: Video recordings of 30 nurse-patient dyads completing telehealth video visit encounters were edited and coded using behavioural indicators of positivity resonance. A post-visit survey gathered data on the participants' perceptions of positivity resonance and the study procedures. The research team completed memos and procedural logs to provide narrative data on the study's training, coding, recruitment and operational procedures. The study included 33 persons with cancer and 13 oncology nurses engaging in telehealth video visit encounters at an academic oncology ambulatory care center located in the southeastern United States. RESULTS: Study procedures were found to be feasible and acceptable to participants. An adequate sample of participants (N = 46) were enrolled and retained in the study. Interrater reliability, as evidenced by Cohen's weighted kappa, ranged from .575 to .752 and interclass correlation coefficients >.8 were attainable within a reasonable amount of time and with adequate training. Behavioural indicators of positivity resonance were observed in all telehealth visits and reported by the participants in the perceived positivity resonance survey. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided reporting. CONCLUSIONS: Designing research around the concept of positivity resonance is an innovative and feasible approach to exploring how rapport is cultivated within nurse-patient relationships. RELEVANCE TO PROFESSIONAL PRACTICE: Measuring positivity resonance may hold promise for exploring patient and nurse outcomes including trust, responsiveness, health-related behaviours, well-being, resilience and satisfaction. REPORTING METHOD: The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided the reporting of results to ensure that adequate details of the study were provided to ensure an accurate and complete report. PATIENT OR PUBLIC CONTRIBUTION: Planning of the research design and study procedures was done in consultation with nurse clinicians with experience with telehealth and managers responsible within the practice setting where the study was conducted. This ensured the study procedures were ethical, safe, secure and did not create unnecessary burden to the study participants. The study included collecting data from nurse and patient participants about the acceptability of the study procedures.

Racial Differences in Shared Decision-Making About Critical Illness.

Importance: Shared decision-making is the preferred method for evaluating complex tradeoffs in the care of patients with critical illness. However, it remains unknown whether critical care clinicians engage diverse patients and caregivers equitably in shared decision-making. Objective: To compare critical care clinicians' approaches to shared decision-making in recorded conversations with Black and White caregivers of patients with critical illness. Design, Setting, and Participants: This thematic analysis consisted of unstructured clinician-caregiver meetings audio-recorded during a randomized clinical trial of a decision aid about prolonged mechanical ventilation at 13 intensive care units in the US. Participants in meetings included critical care clinicians and Black or White caregivers of patients who underwent mechanical ventilation. The codebook included components of shared decision-making and known mechanisms of racial disparities in clinical communication. Analysts were blinded to caregiver race during coding. Patterns within and across racial groups were evaluated to identify themes. Data analysis was conducted between August 2021 and April 2023. Main Outcomes and Measures: The main outcomes were themes describing clinician behaviors varying by self-reported race of the caregivers. Results: The overall sample comprised 20 Black and 19 White caregivers for a total of 39 audio-recorded meetings with clinicians. The duration of meetings was similar for both Black and White caregivers (mean [SD], 23.9 [13.7] minutes vs 22.1 [11.2] minutes, respectively). Both Black and White caregivers were generally middle-aged (mean [SD] age, 47.6 [9.9] years vs 51.9 [8.8] years, respectively), female (15 [75.0%] vs 14 [73.7%], respectively), and possessed a high level of self-assessed health literacy, which was scored from 3 to 15 with lower scores indicating increasing health literacy (mean [SD], 5.8 [2.3] vs 5.3 [2.0], respectively). Clinicians conducting meetings with Black and White caregivers were generally young (mean [SD] age, 38.8 [6.6] years vs 37.9 [8.2] years, respectively), male (13 [72.2%] vs 12 [70.6%], respectively), and White (14 [77.8%] vs 17 [100%], respectively). Four variations in clinicians' shared decision-making behaviors by caregiver race were identified: (1) providing limited emotional support for Black caregivers, (2) failing to acknowledge trust and gratitude expressed by Black caregivers, (3) sharing limited medical information with Black caregivers, and (4) challenging Black caregivers' preferences for restorative care. These themes encompass both relational and informational aspects of shared decision-making. Conclusions and Relevance: The results of this thematic analysis showed that critical care clinicians missed opportunities to acknowledge emotions and value the knowledge of Black caregivers compared with White caregivers. These findings may inform future clinician-level interventions aimed at promoting equitable shared decision-making.

A Hybrid Pragmatic and Factorial Cluster Randomized Controlled Trial for an Anti-racist, Multilevel Intervention to Improve Mental Health Equity in High Schools.

Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.

Mobile Application-Based Communication Facilitation Platform for Family Members of Critically Ill Patients: A Randomized Clinical Trial.

Importance: Unmet and racially disparate palliative care needs are common in intensive care unit (ICU) settings. Objective: To test the effect of a primary palliative care intervention vs usual care control both overall and by family member race. Design, Setting, and Participants: This cluster randomized clinical trial was conducted at 6 adult medical and surgical ICUs in 2 academic and community hospitals in North Carolina between April 2019 and May 2022 with physician-level randomization and sequential clusters of 2 Black patient-family member dyads and 2 White patient-family member dyads enrolled under each physician. Eligible participants included consecutive patients receiving mechanical ventilation, their family members, and their attending ICU physicians. Data analysis was conducted from June 2022 to May 2023. Intervention: A mobile application (ICUconnect) that displayed family-reported needs over time and provided ICU attending physicians with automated timeline-driven communication advice on how to address individual needs. Main Outcomes and Measures: The primary outcome was change in the family-reported Needs at the End-of-Life Screening Tool (NEST; range 0-130, with higher scores reflecting greater need) score between study days 1 and 3. Secondary outcomes included family-reported quality of communication and symptoms of depression, anxiety, and posttraumatic stress disorder at 3 months. Results: A total of 111 (51% of those approached) family members (mean [SD] age, 51 [15] years; 96 women [86%]; 15 men [14%]; 47 Black family members [42%]; 64 White family members [58%]) and 111 patients (mean [SD] age, 55 [16] years; 66 male patients [59%]; 45 Black patients [41%]; 65 White patients [59%]; 1 American Indian or Alaska Native patient [1%]) were enrolled under 37 physicians randomized to intervention (19 physicians and 55 patient-family member dyads) or control (18 physicians and 56 patient-family member dyads). Compared with control, there was greater improvement in NEST scores among intervention recipients between baseline and both day 3 (estimated mean difference, -6.6 points; 95% CI, -11.9 to -1.3 points; P = .01) and day 7 (estimated mean difference, -5.4 points; 95% CI, -10.7 to 0.0 points; P = .05). There were no treatment group differences at 3 months in psychological distress symptoms. White family members experienced a greater reduction in NEST scores compared with Black family members at day 3 (estimated mean difference, -12.5 points; 95% CI, -18.9 to -6.1 points; P < .001 vs estimated mean difference, -0.3 points; 95% CI, -9.3 to 8.8 points; P = .96) and day 7 (estimated mean difference, -9.5 points; 95% CI, -16.1 to -3.0 points; P = .005 vs estimated mean difference, -1.4 points; 95% CI, -10.7 to 7.8; P = .76). Conclusions and Relevance: In this study of ICU patients and family members, a primary palliative care intervention using a mobile application reduced unmet palliative care needs compared with usual care without an effect on psychological distress symptoms at 3 months; there was a greater intervention effect among White family members compared with Black family members. These findings suggest that a mobile application-based intervention is a promising primary palliative care intervention for ICU clinicians that directly addresses the limited supply of palliative care specialists. Trial Registration: ClinicalTrials.gov Identifier: NCT03506438.

The Concept of Double Protection in the Childhood Cancer Context.

BACKGROUND: The concept of double protection is used to describe communication avoidance used by parents and their child or adolescents with cancer in attempts to protect the other against disease-related stress and emotions, resulting from communication about the cancer, its treatment, and thoughts. This concept has received limited attention in the research literature. OBJECTIVES: The aims of this concept analysis are to (1) explore its defining characteristics, applicability, and utility, (2) spotlight the concept and increase awareness and interest among healthcare providers and researchers, and (3) provide a direction for future interventions to improve parent-child communication in the childhood cancer context. METHODS: Rodgers' Evolutionary Concept Analysis was used, and the findings from a study that explored the communication experience of Korean adolescents with cancer and their parents were integrated. RESULTS: This study explored the attributes, antecedents, consequences, and related terms. The following attributes were extracted: intention to protect, bidirectional, and absence of parent-child communication at a deeper level. CONCLUSION: Clarification of the concept of double protection provides insight into the concept as a barrier to engagement in parent-child communication and supports the significance of double protection in the childhood cancer context. IMPLICATIONS FOR PRACTICE: There is a need for increased awareness of the challenges and dangers inherent in family communication avoidance, double protection. In order to address the issue, developing developmentally appropriate and valid clinical assessment tool and interventions are required. More research on the evidence-based benefits of effective parent-child communication is also required.

Challenges and coping between parents in shared decision-making for children with complex, life-threatening conditions: A qualitative content analysis.

BACKGROUND & PURPOSE: Relatively little is known about the parents' challenges and coping in making decisions for children with complex, life-threatening conditions. Therefore, this secondary analysis aimed to explore the challenges and coping between parents while navigating their decision-making by focusing on their interpersonal relationship. DESIGN & METHOD: Data from 38 interviews with parent couples of 20 infants diagnosed with congenital heart disease or receiving hematopoietic stem cell transplantation (HSCT) were analyzed using a conventional content analysis. RESULTS: Findings revealed the key challenges between parents in decision-making and how they cope with the challenges together as represented by two main themes of "Challenges faced by parents in making decisions together" and "Parents' collaborative coping with the challenges of making shared decisions." DISCUSSION: The majority of challenges that parents face in making decisions were closely related to the nature of the children's complex and life-threatening illness and uncertainty. However, supportive partner helped coping and decision-making, indicating the vital role of spouses in making decisions for their ill child. IMPLICATIONS: Assessing parents' marital relationship, providing enough information to ensure that both parents clearly understand the information, and encouraging parents to openly communicate with each other are recommended. Educating healthcare providers to support parents to partner together in shared decision-making is also required. Last, legislating laws that mandate providing psychological counseling services and developments of community-based interventions to support parental relationship would improve parents' shared decision-making. Further research on enhancing parental relationships in the context of a child's illness is required.

Impact of primary care usual provider type and provider interdependence on outcomes for patients with diabetes: a cohort study.

BACKGROUND: Interprofessional primary care (PC) teams are key to the provision of high-quality care. PC providers often 'share' patients (eg, a patient may see multiple providers in the same clinic), resulting in between-visit interdependence between providers. However, concern remains that PC provider interdependence will reduce quality of care, causing some organisations to hesitate in creating multiple provider teams. If PC provider teams are formalised, the PC usual provider of care (UPC) type (physician, nurse practitioner (NP) or physician assistant/associate (PA)) should be determined for patients with varying levels of medical complexity. OBJECTIVE: To evaluate the impact of PC provider interdependence, UPC type and patient complexity on diabetes-specific outcomes for adult patients with diabetes. DESIGN: Cohort study using electronic health record data from 26 PC practices in central North Carolina, USA. PARTICIPANTS: Adult patients with diabetes (N=10 498) who received PC in 2016 and 2017. OUTCOME: Testing for diabetes control, testing for lipid levels, mean glycated haemoglobin (HbA1c) values and mean low-density lipoprotein (LDL) values in 2017. RESULTS: Receipt of guideline recommended testing was high (72% for HbA1c and 66% for LDL testing), HbA1c values were 7.5% and LDL values were 88.5 mg/dL. When controlling for a range of patient and panel level variables, increases in PC provider interdependence were not significantly associated with diabetes-specific outcomes. Similarly, there were no significant differences in the diabetes outcomes for patients with NP/PA UPCs when compared with physicians. The number and type of a patient's chronic conditions did impact the receipt of testing, but not average values for HbA1c and LDL. CONCLUSIONS: A range of UPC types on PC multiple provider teams can deliver guideline-recommended diabetes care. However, the number and type of a patient's chronic conditions alone impacted the receipt of testing, but not average values for HbA1c and LDL.

MyKidneyCoach, Patient Activation, and Clinical Outcomes in Diverse Kidney Transplant Recipients: A Randomized Control Pilot Trial.

Kidney transplant (KT) recipients who are not actively engaged in their care and lack self-management skills have poor transplant outcomes, which are disproportionately observed among Black KT recipients. This pilot study aimed to determine whether the MyKidneyCoach app, an mHealth intervention that provides self-management monitoring and coaching, improved patient activation, engagement, and nutritional behaviors in a diverse KT population. Methods: This was a randomized, age-stratified, parallel-group, attention-control, pilot study in post-KT patients. Participants were randomized into the attention-control with access to MyKidneyCoach for education and self-management (n = 9) or the intervention with additional tailored nurse coaching (n = 7). Feasibility, acceptability, and clinical outcomes were assessed. Results: The acceptability of MyKidneyCoach by System Usability Scale was 67.5 (95% confidence interval [CI], 59.1-75.9). Completion rates based on actively using MyKidneyCoach were 81% (95% CI, 57%-93%) and study retention rate of 73%. Patient activation measure significantly increased overall by a mean of 11 points (95% CI, 3.2-18.8). Additionally, Black patients (n = 7) had higher nutrition self-efficacy scores of 80.5 (95% CI, 74.4-86.7) compared with 75.6 (95% CI, 71.1-80.1) in non-Black patients (n = 9) but lower patient activation measure scores of 69.3 (95% CI, 56.3-82.3) compared with 71.8 (95% CI, 62.5-81) in non-Black patients after 3 mo. Conclusions: MyKidneyCoach was easy to use and readily accepted with low attrition, and improvements were demonstrated in patient-reported outcomes. Both Black and non-Black participants using MyKidneyCoach showed improvement in self-management competencies; thus, this intervention may help reduce healthcare inequities in KT.

Identification of high-risk symptom cluster burden group among midlife peri-menopausal and post-menopausal women with metabolic syndrome using latent class growth analysis.

BACKGROUND: Midlife peri-menopausal and post-menopausal women with metabolic syndrome experience multiple co-occurring symptoms or symptom clusters, which often result in significant symptom cluster burden. While they are a high-risk symptom burden group, there are no studies that have focused on identifying symptom cluster trajectories in midlife peri-menopausal and post-menopausal women with metabolic syndrome. OBJECTIVES: The objectives were to identify meaningful subgroups of midlife peri-menopausal and post-menopausal women with metabolic syndrome based on their distinct symptom cluster burden trajectories, and to describe the demographic, social, and clinical characteristics of different symptom cluster burden subgroups. DESIGN: This is a secondary data analysis using the longitudinal data from Study of Women's Health Across the Nation. METHODS: Multi-trajectory analysis using latent class growth analysis was conducted to join the different developmental trajectories of symptom clusters to identify meaningful subgroups and high-risk subgroup for greater symptom cluster burden over time. Then, descriptive statistics were used to explain the demographic characteristics of each symptom cluster trajectory subgroup, and bivariate analysis to examine the association between each symptom cluster trajectory subgroup and demographic characteristics. RESULTS: A total of four classes were identified: Class 1 (low symptom cluster burden), Classes 2 and 3 (moderate symptom cluster burden), and Class 4 (high symptom cluster burden). Social support was a significant predictor of high symptom cluster burden subgroup and highlights the need to provide routine assessment. CONCLUSION: An understanding and appreciation for the different symptom cluster trajectory subgroups and their dynamic nature will assist clinicians to offer targeted and routine symptom cluster assessment and management in clinical settings.

Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations.

The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics (ie, quality of life, end of life) with an understanding of the multilayered external influences that affect patient/parent decision making. A 5-layer model is presented that describes facilitators to conversations about quality goals of care and advance directives. Each year, complex health conditions (a) affect approximately 500 000 children in the United States, 8600 of whom meet current palliative care criteria, and (b) account for over 7 million child deaths globally. Nurses can use knowledge of the unique values and culture of families with children who have complex health conditions to support them by providing high quality, ongoing goals-of-care conversations, especially if their access to pediatric palliative care is limited.

Child and family factors associated with positive outcomes among youth born extremely preterm.

BACKGROUND: To analyze the relationship of child behavioral and communication disorders, and adverse family events, to later-in-life child health and cognitive function among youth born extremely preterm. METHODS: The study participants were 694 children enrolled in the Extremely Low Gestational Age Newborn Study. At ages 2 and 10, we assessed internalizing and externalizing behaviors, and at age 10, we assessed adverse life events within the family. Associations were evaluated between these child and family factors and positive child health at age 10 years, and global health and cognitive function at age 15 years. RESULTS: Lower T-scores for internalizing or externalizing behaviors at age 2 were associated with more positive health at age 10. The absence of internalizing behaviors at age 10 was associated with better global child health and better cognitive function at age 15. The absence of communication deficits at age 10 was associated with better cognitive function at age 15. The absence of parent job loss was associated with better global child health at age 15. CONCLUSION: Among individuals born extremely preterm, child health and cognitive outcomes might be improved by timely interventions to address child behavioral symptoms and the impact of adverse life events in the family. IMPACT: The absence of child behavioral and communication disorders, and adverse family events, were associated with more positive health, higher global health, and better cognitive function among youth born extremely preterm. Interventions to address behavioral disorders in early childhood, and to reduce the impact of adverse life events on the family, might promote improved health and developmental outcomes for adolescents born extremely preterm.

Caregiver Perspectives on Telemedicine for Postdischarge Care for Children With Medical Complexity: A Qualitative Study.

INTRODUCTION: The objectives of this study were to describe the perspectives of caregivers of children with medical complexity on telemedicine video visits (TMVV) for posthospitalization care and determine whether TMVV may be a viable alternative to in-person follow-up. METHOD: Our qualitative descriptive study included semistructured telephone interviews with 12 caregivers. Data analysis was conducted using an adapted Colaizzi's descriptive phenomenological method for thematic construction. RESULTS: Results were organized into four themes describing caregivers' experiences with TMVV: (1) promoted caregiver self-efficacy and sense of independence; (2) TMVV as convenient, cost-effective, comprehensive, and acceptable; (3) supported caregiver decision-making and problem-solving; and (4) fostered delivery of family-centered care. DISCUSSION: Although in-person visits are necessary for some circumstances, TMVV can serve as a convenient and acceptable alternative for posthospitalization follow-up in children with medical complexity. Overall, caregivers in this study were satisfied with the quality of care and individualized experience of TMVV.

Distinct morning and evening fatigue profiles in gastrointestinal cancer during chemotherapy.

BACKGROUND: Purposes were to identify subgroups of patients with gastrointestinal cancers with distinct morning and evening fatigue severity profiles and evaluate for differences among these subgroups in demographic and clinical characteristics, co-occurring symptoms and quality of life (QOL) outcomes. METHODS: Patients with gastrointestinal cancers (n=405) completed questionnaires six times over two cycles of chemotherapy. Latent profile analysis was used to identify distinct morning and evening fatigue profiles. Differences in demographic and clinical characteristics, co-occurring symptoms and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. RESULTS: Two distinct mornings (ie, low and very high) and three distinct evenings (ie, low, moderate and very high) fatigue classes were identified. Common risk factors for both morning and evening fatigue included younger age, lower performance status, higher comorbidity burden and self-reported depression. Higher levels of morning fatigue were associated with being unmarried, living alone, being unemployed, having a lower income, lack of regular exercise and a self-reported diagnosis of anaemia. Higher levels of evening fatigue were associated with being women, white and having childcare responsibilities. Patients in the very high morning and evening fatigue classes reported higher levels of anxiety, depressive symptoms, sleep disturbance and pain and lower levels of attentional function and poorer QOL. CONCLUSION: Findings provide new insights into risk factors for and deleterious effects of morning and evening fatigue in patients with gastrointestinal cancers. Clinicians can use this information to identify high-risk patients and develop individualised interventions for morning and evening fatigue and other co-occurring symptoms.

Trajectories of Palliative Care Needs in the ICU and Long-Term Psychological Distress Symptoms.

OBJECTIVES: While palliative care needs are assumed to improve during ICU care, few empiric data exist on need trajectories or their impact on long-term outcomes. We aimed to describe trajectories of palliative care needs during ICU care and to determine if changes in needs over 1 week was associated with similar changes in psychological distress symptoms at 3 months. DESIGN: Prospective cohort study. SETTING: Six adult medical and surgical ICUs. PARTICIPANTS: Patients receiving mechanical ventilation for greater than or equal to 2 days and their family members. MEASUREMENTS AND MAIN RESULTS: The primary outcome was the 13-item Needs at the End-of-Life Screening Tool (NEST; total score range 0-130) completed by family members at baseline, 3, and 7 days. The Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Post-Traumatic Stress Scale (PTSS) were completed at baseline and 3 months. General linear models were used to estimate differences in distress symptoms by change in need (NEST improvement ≥ 10 points or not). One-hundred fifty-nine family members participated (median age, 54.0 yr [interquartile range (IQR), 44.0-63.0 yr], 125 [78.6%] female, 54 [34.0%] African American). At 7 days, 53 (33%) a serious level of overall need and 35 (22%) ranked greater than or equal to 1 individual need at the highest severity level. NEST scores improved greater than or equal to 10 points in only 47 (30%). Median NEST scores were 22 (IQR, 12-40) at baseline and 19 (IQR, 9-37) at 7 days (change, -2.0; IQR, -11.0 to 5.0; p = 0.12). There were no differences in PHQ-9, GAD-7, or PTSS change scores by change in NEST score (all p > 0.15). CONCLUSIONS: Serious palliative care needs were common and persistent among families during ICU care. Improvement in needs was not associated with less psychological distress at 3 months. Serious needs may be commonly underrecognized in current practice.

Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions.

Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.