Patient, Parent, and Oncologist Perspectives and Recommendations on the Right Way to Talk About Prognosis in Advanced Childhood Cancer.

PURPOSE: Clear prognostic communication is associated with improvements in quality of life and suffering for children with advanced illness. Yet recent evidence demonstrates that pediatric oncologists often avoid, defer, or soften prognostic disclosure. We aimed to describe pediatric cancer shareholder perspectives on quality prognostic communication to inform design of an intervention to improve prognostic disclosure in advanced childhood cancer. METHODS: Semi-structured interviews were conducted with a purposeful sample of pediatric patients with cancer (n = 20), parents (n = 20), and oncologists (n = 20) representing six institutions across five states. Rapid analysis was performed using the National Cancer Institute core communication functions to organize domains of inquiry. RESULTS: Three main themes were endorsed by participants regarding the ideal timing of prognostic disclosure: early, ongoing, individualized. Although each group emphasized the need for an individualized approach, oncologists rarely elicited patient/parent preferences for prognostic communication and more commonly inferred what a patient/family wanted to hear. Participants described five key pillars for how to facilitate quality prognostic disclosure: conversation leadership, overall attendance, patient inclusion, location, and atmosphere. They also identified four themes around ideal prognostic content: range of information, use of numbers, population-level versus patient-specific information, and tone/delivery. Discordant recommendations between patients/parents and oncologists emerged for how much and what information to share. CONCLUSION: Pediatric cancer shareholders advocated for diverse, and sometimes conflicting, approaches for prognostic disclosure. Although nearly all participants endorsed the importance of individualized prognostic disclosure, specific strategies to encourage or facilitate person-centered prognostic conversation are lacking. Future research will focus on collaboration with pediatric patients, parents, and oncologists to codesign a clinical intervention to improve prognostic communication for children with advanced cancer and their families.

Parent-Clinician Communication and Prolonged Grief in Parents Whose Child Died From Cancer.

CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death. OBJECTIVES: To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care. METHODS: We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations. RESULTS: Across N = 124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F = 9.26, P = 0.003). Preparation for EOL fully mediated this association. CONCLUSION: Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement.

Sleep disorder symptoms and suicidal urges among US Marines seeking suicide treatment: Findings from an intensive daily assessment study.

BACKGROUND: Rates of suicide in United States Marines are among the highest in the military, and sleep disorder symptoms are a known risk factor for suicide in the military. Intensive ecological momentary assessments (EMA) might improve the ability to detect periods that are characterized by increased suicidal ideation. Marines who were at high risk for suicide were intensively assessed for one month on sleep, suicidal urges, posttraumatic stress disorder (PTSD) and depression symptoms. METHODS: U.S. Marines (N = 40) who had a past month suicide attempt or suicidal urges with intent were sent EMA for 28 days. Mixed effects models explored associations among daily sleep, suicidal urges, PTSD, and depression symptoms. RESULTS: Worsened sleep indicators on a given night significantly predicted higher maximum values of suicide urges the following day. Worse sleep quality the prior night was moderately associated with more severe PTSD symptoms and depression symptoms. Greater severity of PTSD symptoms and depression symptoms were strongly associated with both the maximum value and the range of suicide urges. PTSD and depression symptoms mediated the relationship between sleep quality and suicidal urges. Participants reported that 0000-0300 had the greatest elevation in endorsement of highest suicide urges. LIMITATIONS: This study had a small sample size may not generalize beyond active duty Marines. CONCLUSIONS: Poor sleep quality and other sleep markers were an important risk factor for suicidal urges among U.S. Marines. This relationship was mediated by exacerbations in PTSD and depression symptoms. Interventions are needed to interrupt suicide risk during and following nights with poor sleep.

Utilization of Palliative Radiation in Pediatric Oncology Patients During the End-of-Life (EOL).

BACKGROUND: Suffering at the end-of-life (EOL) can impact the perception of a "good death" and ultimately affect bereavement for families of children with cancer. Palliative radiation (pXRT) is a tool that can address pain, mitigate suffering and improve quality of life. METHODS: A retrospective medical record review of pediatric oncology patients who died over an 11-year period was completed. Descriptive analysis and nonparametric tests to compare groups were used. RESULTS: 2202 total deaths occurred during the study period; 167 patients met study criteria, reflecting a 7.6% incidence of pXRT use at the EOL. Most patients were white (68%) and male (59%), with a median age of 9 years. Solid tumors were most common (52%), followed by CNS tumors (38%), and leukemia (10%). pXRT was primarily used to treat pain (37%) and focused on sites including brain/spine (37%), head/neck (24%), and pelvis (12%). Mean radiation dose delivered was 23.8Gy (range: 1.8-55.8 Gy) in a median of 7 fractions (range: 1-31). Side effects were rare and 58% of patients had a decrease in reported pain scores. Additionally, 87% received a pediatric palliative care (PPC) consultation which increased the likelihood for hospice referral, documented DNR preferences and decrease episodes of CPR on the day of death. CONCLUSIONS: There is underutilization and significant variability in the use of pXRT during EOL in pediatric oncology. Barriers to this tool may include physician perceptions, family/patient preferences, and logistical hardships. Guidelines to standardize pXRT, alongside earlier PPC integration, may guide clinician decision making and increase pXRT utilization.

Project Safe Guard: Evaluating a Lethal Means Safety Intervention to Reduce Firearm Suicide in the National Guard.

INTRODUCTION: The purpose of this paper is to examine a scalable secure firearm storage intervention in the U.S. National Guard (NG) in preventing firearm injury and suicide. A study among firearm-owning members of the Mississippi NG testing Project Safe Guard (PSG), a 10 to 15 min lethal means counseling intervention, found that PSG increased self-reported secure firearm storage practices. Here, we sought to examine a "real world" rollout of a modified PSG program in the NG in which NG members were trained to understand the importance of lethal means safety and to deliver PSG to Guardsmen peers within their units. MATERIALS AND METHODS: The PSG team collaborated with the NG to identify 4 states for the rollout; for each state, the NG was responsible for identifying key personnel ("facilitators") who would receive the training. Team members provided in-person training at 5 locations across 4 states (AZ, GA, IA, and NV) from January to April 2023. Attendees were provided with combination trigger locks or cable locks and evaluation instructions. Questionnaires were administered to training attendees via REDCap at pre-training and post-training. We conducted descriptive and comparison statistics of questionnaire data. RESULTS: A total of 186 facilitators were trained at 5 in-person training locations across 4 states (AZ, GA, IA, and NV) from January to April 2023; data collection concluded in August 2023. There were 137 pre-training responses (74% pre-survey response rate) and 88 post-training responses (64% response rate from those who took the pre-training survey). Findings demonstrate increases in self-reported knowledge, attitudes, and beliefs regarding firearm injury and suicide and a reported desire to store personal firearms more securely. CONCLUSION: The adapted version of PSG shows promise as a relevant and acceptable intervention among Guardsmen to enhance knowledge and attitudes regarding firearm suicide, increase secure firearm storage practices, and normalize conversations about firearm suicide prevention among peers. This intervention seeks to frame firearm suicide prevention within a culture of safety, complementary to the existing prevention methods and training within the NG.

Entrapment in the military context: Factor structure and associations with suicidal thoughts and behaviors.

BACKGROUND: Improved understanding of how US service members transition from chronic/baseline to acute suicide risk is warranted. One such model, the Integrated Motivational Volitional Model of Suicide, posits entrapment as central to this process. However, entrapment has not been extensively investigated within military populations. METHODS: This study examines the factor structure, reliability, and predictive validity of the Entrapment Scale (E-Scale) within a military population. Exploratory structural equation modeling (SEM) and confirmatory factor analysis compared one- versus two-factor structures of the E-Scale. Autoregressive SEM assessed if E-Scale scores predicted suicidal ideation and suicide attempt likelihood at 6- and 12-month follow-up, and examined whether the impact of entrapment was moderated by social support (i.e., appraisal, tangible, and belonging). RESULTS: Results favored a two-factor solution (external and internal) of entrapment. The relationship between entrapment and suicide outcomes was moderated by perceived social support but in unexpected directions. Unexpectedly, social support strengthened the relationship between external entrapment and suicide outcomes for most models. Only tangible support moderated the relationship between internal entrapment (IE) and suicide outcomes as predicted. CONCLUSIONS: IE is linked with suicidal ideation in the short-term, whereas external entrapments relationship with suicide outcomes may reflect more persistent social challenges for military members.

Adverse and benevolent childhood experiences among adults in the United Kingdom: a latent class analysis.

BACKGROUND: Adverse childhood experiences (ACEs) are important factors for population mental and physical health. While considerable public health literature demonstrates the global relevance of ACEs, more recent research shows that benevolent childhood experiences (BCEs) might be important to consider in their direct and mitigating roles for psychological distress and other mental health outcomes. There is little evidence of latent class examinations involving both ACEs and BCEs among adults in western nations. The present study sought to replicate and extend prior literature by: (1) assessing the extent to which past latent class groupings reproduce in present samples, and (2) analyzing the association of latent classes of childhood experiences with psychological distress and suicidal thoughts and behaviours (STBs). We examined psychological distress (i.e., depression, anxiety, post-traumatic stress, general wellbeing) and STBs (i.e., suicidal ideation, self-harm ideation and behaviour, entrapment, and defeat). METHOD: Data were drawn from two nationwide cross-sectional online survey studies in the United Kingdom. The first sample (N = 488) was drawn from a study on suicidal behaviour, and the second sample (N = 447) was from a study concerning risk for interpersonal violence. RESULTS: Results largely replicated an existing four class solution of childhood experiences: Class 1 (Moderate ACEs/High BCEs; 17.6%), Class 2 (High ACEs/Moderate BCEs; 15.3%), Class 3 (Low ACEs/High BCEs; 48.3%), and Class 4 (Low ACEs/Moderate BCEs; 18.8%). Class 2 (High ACEs/Moderate BCEs) was associated with consistently worse psychological distress and STBs. Classes containing high BCEs (1 and 3) were characterized by generally lower levels of psychological distress and STBs. CONCLUSIONS: Results affirm the potential value for jointly considering ACEs and BCEs to understand psychological distress and STBs. ACEs and BCEs may serve foundational roles in theories of suicide. The protective role of BCEs hypothesized in resiliency theory may be supported. Prevention practice and research implications are discussed.

Dignity in the Pediatric Population: A Systematic Review.

CONTEXT: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature and other outcome measures. OBJECTIVES: To characterize how dignity is defined, evaluated, and/or measured in pediatrics. METHODS: We conducted a systematic review following PRISMA guidelines across the following databases: MEDLINE, Embase, Cumulative Index of Nursing and Allied Health, PsycINFO, Global Health, Social Science Premium Collection, and Dissertation and Theses. We included publications from database inception through April 2023, in English, involving children aged 0-18 years, and prioritizing dignity as a central theme with a focus on defining, evaluating, or measuring dignity. Study descriptions and pertinent characteristics were extracted and synthesized using a predefined form. RESULTS: Forty-four articles met inclusion criteria; fewer than half comprised original research (20/44, 45%). Most studies (38/44, 86%) included description of the meaning of dignity, with emergence of salient themes around respect, communication, agency/autonomy, and privacy. Less than half (19/44, 43%) included a measurement or evaluation of dignity; approximately one-third described dignity therapy. More than one-third of publications focused on dignity at end of life (17/44, 39%) and included discussions of palliative medicine and hospice (15/44, 34%). CONCLUSION: Relatively few published studies describe dignity in pediatrics. Opportunities exist to broaden scholarship on this topic in partnership with patients, families, and clinicians, with the goal of assessing and strengthening dignity-centered care across the illness course and at the end of life.

Language to Support Dignity for Children With Advanced Cancer and Their Families.

BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child's death. Using a hybrid deductive-inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of "bad news" encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model ("Lend an EAR") to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.

The Transdiagnostic Connectome Project: a richly phenotyped open dataset for advancing the study of brain-behavior relationships in psychiatry.

An important aim in psychiatry is the establishment of valid and reliable associations linking profiles of brain functioning to clinically relevant symptoms and behaviors across patient populations. To advance progress in this area, we introduce an open dataset containing behavioral and neuroimaging data from 241 individuals aged 18 to 70, comprising 148 individuals meeting diagnostic criteria for a broad range of psychiatric illnesses and a healthy comparison group of 93 individuals. These data include high-resolution anatomical scans, multiple resting-state, and task-based functional MRI runs. Additionally, participants completed over 50 psychological and cognitive assessments. Here, we detail available behavioral data as well as raw and processed MRI derivatives. Associations between data processing and quality metrics, such as head motion, are reported. Processed data exhibit classic task activation effects and canonical functional network organization. Overall, we provide a comprehensive and analysis-ready transdiagnostic dataset, which we hope will accelerate the identification of illness-relevant features of brain functioning, enabling future discoveries in basic and clinical neuroscience.

Implementation of a hospital-based end-of-life and bereavement care program in a latin American middle-income country. A source of light and compassion in the midst of cloudy times.

BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. METHODS: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. RESULTS: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. CONCLUSIONS: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.

Collaboration matters: A randomized controlled trial of patient-clinician collaboration in suicide risk assessment and intervention.

BACKGROUND: Clinician collaboration can help high-risk individuals to manage their suicidal crises. However, limited research has directly examined how higher patient-clinician collaboration during assessment and intervention can effectively reduce suicidal ideation. This novel randomized clinical trial compared a high vs. low level of patient-clinician collaboration by pairing commonly used assessment (Structured Interview vs. Narrative Assessment) and intervention approaches (Safety Planning Intervention vs. Crisis Response Planning). We hypothesized that the interventions involving higher (than lower) patient-clinician collaboration during assessment (Narrative Assessment) or intervention (Crisis Response Planning) would lead to larger reductions in suicidal ideation. METHODS: Eighty-two participants with a history of suicide ideation and/or attempts were randomly assigned to one of the four interventions varying in patient-clinician collaboration. After attrition, sixty-six participants completed the study. Suicidal ideation via ecological momentary assessment was measured 14 days before and 14 days after treatment. RESULTS: Although the severity of suicidal ideation decreased in all groups, the two groups that included highly collaborative assessment had larger pre-post reductions in suicidal ideation (Narrative Assessment+Safety Plan; dwithin = 0.26, and Narrative Assessment+Crisis Response Plan; dwithin = 0.19) than the groups that included a checklist-based assessment (Structured Interview). LIMITATIONS: Longer follow-up periods with a larger sample would have provided an understanding of the durability of intervention effects. CONCLUSION: Results suggest that the inclusion of higher patient-clinician collaboration techniques during suicide risk assessment can effectively reduce suicidal thoughts. Thus, clinician-led collaborative risk assessment approaches can enhance the effects of safety planning-type interventions among patients with elevated risk for suicide versus checklist-based assessment approaches.

Global-to-Local Dependencies in Phosphorus Mass Flows and Markets: Pathways to Improving System Resiliency in Response to Exogenous Shocks.

Uneven global distribution of phosphate rock deposits and the supply chains to transport phosphorus (P) make P fertilizers vulnerable to exogenous shocks, including commodity market shocks; extreme weather events or natural disasters; and geopolitical instability, such as trade disputes, disruption of shipping routes, and war. Understanding bidirectional risk transmission (global-to-local and local-to-global) in P supply and consumption chains is thus essential. Ignoring P system interdependencies and associated risks could have major impacts on critical infrastructure operations and increase the vulnerability of global food systems. We highlight recent unanticipated events and cascading effects that have impacted P markets globally. We discuss the need to account for exogenous shocks in local assessments of P flows, policies, and infrastructure design choices. We also provide examples of how accounting for undervalued global risks to the P industry can hasten the transition to a sustainable P future. For example, leveraging internal P recycling loops, improving plant P use efficiency, and utilizing legacy soil P all enhance system resiliency in the face of exogenous shocks and long-term anticipated threats. Strategies applied at the local level, which are embedded within national and global policy systems, can have global-scale impacts in derisking the P supply chain.

Testing unit root non-stationarity in the presence of missing data in univariate time series of mobile health studies.

The use of digital devices to collect data in mobile health studies introduces a novel application of time series methods, with the constraint of potential data missing at random or missing not at random (MNAR). In time-series analysis, testing for stationarity is an important preliminary step to inform appropriate subsequent analyses. The Dickey-Fuller test evaluates the null hypothesis of unit root non-stationarity, under no missing data. Beyond recommendations under data missing completely at random for complete case analysis or last observation carry forward imputation, researchers have not extended unit root non-stationarity testing to more complex missing data mechanisms. Multiple imputation with chained equations, Kalman smoothing imputation, and linear interpolation have also been used for time-series data, however such methods impose constraints on the autocorrelation structure and impact unit root testing. We propose maximum likelihood estimation and multiple imputation using state space model approaches to adapt the augmented Dickey-Fuller test to a context with missing data. We further develop sensitivity analyses to examine the impact of MNAR data. We evaluate the performance of existing and proposed methods across missing mechanisms in extensive simulations and in their application to a multi-year smartphone study of bipolar patients.

Multilevel Characteristics of Cumulative Symptom Burden in Young Survivors of Childhood Cancer.

Importance: Symptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied. Objective: To examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL). Design, Setting, and Participants: A cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024. Exposures: Diagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose. Main Outcomes and Measures: Novel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations. Results: Among 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, -0.60; 95% CI, -0.87 to -0.32) and moderate/high (d, -0.98; 95% CI, -1.53 to -0.43) general pain, moderate/high numbness (d, -0.99; 95% CI, -1.69 to -0.29), and moderate/high worry (d, -0.55; 95% CI, -0.99 to -0.11) were associated with lower HRQOL. Conclusions and Relevance: In this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Ethological computational psychiatry: Challenges and opportunities.

Studying the intricacies of individual subjects' moods and cognitive processing over extended periods of time presents a formidable challenge in medicine. While much of systems neuroscience appropriately focuses on the link between neural circuit functions and well-constrained behaviors over short timescales (e.g., trials, hours), many mental health conditions involve complex interactions of mood and cognition that are non-stationary across behavioral contexts and evolve over extended timescales. Here, we discuss opportunities, challenges, and possible future directions in computational psychiatry to quantify non-stationary continuously monitored behaviors. We suggest that this exploratory effort may contribute to a more precision-based approach to treating mental disorders and facilitate a more robust reverse translation across animal species. We conclude with ethical considerations for any field that aims to bridge artificial intelligence and patient monitoring.

"Understanding why she had to leave me": The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer.

Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences. Participants whose children died of cancer one to six years prior to participation completed a one-on-one semi-structured interview. Interview transcripts underwent qualitative analysis. Content pertaining to religion and/or spirituality underwent subsequent in-depth analysis to identify themes. Of 30 interviews analyzed, 28 contained religion/spirituality content. Four themes arose: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious and spiritual interactions within the medical community. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions.

Evaluating the Acceptability and Feasibility of Collecting Passive Smartphone Data to Estimate Psychological Functioning in U.S. Service Members and Veterans: A Pilot Study.

INTRODUCTION: This study investigated the acceptability and feasibility of digital phenotyping in a military sample with a history of traumatic brain injury and co-occurring psychological and cognitive symptoms. The first aim was to evaluate the acceptability of digital phenotyping by (1a) quantifying the proportion of participants willing to download the app and rates of dropout and app discontinuation and (1b) reviewing the stated reasons for both refusing and discontinuing use of the app. The second aim was to investigate technical feasibility by (2a) characterizing the amount and frequency of transferred data and (2b) documenting technical challenges. Exploratory aim 3 sought to leverage data on phone and keyboard interactions to predict if a participant (a) is depressed and (b) has depression that improves over the course of the study. MATERIALS AND METHODS: A passive digital phenotyping app (Mindstrong Discovery) functioned in the background of the participants' smartphones and passively collected phone usage and typing kinematics data. RESULTS: Fifteen out of 16 participants (93.8%) consented to install the app on their personal smartphone devices. Four participants (26.7%) discontinued the use of the app partway through the study, primarily because of keyboard usability and technical issues. Fourteen out of 15 participants (93.3%) had at least one data transfer, and the median number of days with data was 40 out of a possible 57 days. The exploratory machine learning models predicting depression status and improvement in depression performed better than chance. CONCLUSIONS: The findings of this pilot study suggest that digital phenotyping is acceptable and feasible in a military sample and provides support for future larger investigations of this technology.

Precision Assessment of Real-World Associations Between Stress and Sleep Duration Using Actigraphy Data Collected Continuously for an Academic Year: Individual-Level Modeling Study.

BACKGROUND: Heightened stress and insufficient sleep are common in the transition to college, often co-occur, and have both been linked to negative health outcomes. A challenge concerns disentangling whether perceived stress precedes or succeeds changes in sleep. These day-to-day associations may vary across individuals, but short study periods and group-level analyses in prior research may have obscured person-specific phenotypes. OBJECTIVE: This study aims to obtain stable estimates of lead-lag associations between perceived stress and objective sleep duration in the individual, unbiased by the group, by developing an individual-level linear model that can leverage intensive longitudinal data while remaining parsimonious. METHODS: In total, 55 college students (n=6, 11% second-year students and n=49, 89% first-year students) volunteered to provide daily self-reports of perceived stress via a smartphone app and wore an actigraphy wristband for the estimation of daily sleep duration continuously throughout the academic year (median usable daily observations per participant: 178, IQR 65.5). The individual-level linear model, developed in a Bayesian framework, included the predictor and outcome of interest and a covariate for the day of the week to account for weekly patterns. We validated the model on the cohort of second-year students (n=6, used as a pilot sample) by applying it to variables expected to correlate positively within individuals: objective sleep duration and self-reported sleep quality. The model was then applied to the fully independent target sample of first-year students (n=49) for the examination of bidirectional associations between daily stress levels and sleep duration. RESULTS: Proof-of-concept analyses captured expected associations between objective sleep duration and subjective sleep quality in every pilot participant. Target analyses revealed negative associations between sleep duration and perceived stress in most of the participants (45/49, 92%), but their temporal association varied. Of the 49 participants, 19 (39%) showed a significant association (probability of direction>0.975): 8 (16%) showed elevated stress in the day associated with shorter sleep later that night, 5 (10%) showed shorter sleep associated with elevated stress the next day, and 6 (12%) showed both directions of association. Of note, when analyzed using a group-based multilevel model, individual estimates were systematically attenuated, and some even reversed sign. CONCLUSIONS: The dynamic interplay of stress and sleep in daily life is likely person specific. Paired with intensive longitudinal data, our individual-level linear model provides a precision framework for the estimation of stable real-world behavioral and psychological dynamics and may support the personalized prioritization of intervention targets for health and well-being.