Importance:Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation. Objective:To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings. Design, Setting, and Participants:This pragmatic, stepped-wedge comparative effectiveness trial enrolled and observed participants from 19 community neurology practices supported by PC teams at 2 academic centers from March 8, 2017, to December 31, 2020. Participants were eligible if they had PDRD and moderate to high PC needs. A total of 612 persons with PDRD were referred; 253 were excluded. Patients were excluded if they had another diagnosis meriting PC, were receiving PC, or were unable or unwilling to follow study procedures. Patients received usual care or the intervention based on when their community neurologist was randomized to start the intervention. Data were analyzed from January 2021 to September 2023. Intervention:The intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth. Main Outcomes and Measures:The primary outcomes were differences at 6 months in patient quality of life (QOL; measured by the Quality of Life in Alzheimer Disease Scale [QOL-AD]) and caregiver burden (Zarit Burden Interview) between the intervention and usual care. Results:A total of 359 patients with PDRD (233 men [64.9%]; mean [SD] age, 74.0 [8.8] years) and 300 caregivers were enrolled. At 6 months, compared with usual care, participants receiving the intervention had better QOL (QOL-AD score, 0.09 [95% CI, -0.63 to 0.82] vs -0.88 [95% CI, -1.62 to -0.13]; treatment effect estimate, 0.97; 95% CI, 0.07-1.86; P = .03). No significant difference was observed in caregiver burden (Zarit Burden Interview score, 1.19 [95% CI, 0.16 to 2.23] vs 0.55 [95%, -0.44 to 1.54]; treatment effect estimate, 0.64; 95% CI, -0.62 to 1.90; P = .32). Advance directive completion was higher under the intervention (19 of 38 [50%] vs 6 of 31 [19%] among those without directives at the beginning of the study; P = .008). There were no differences in other outcomes. Conclusions and Relevance:PC education for community neurologists and provision of team-based PC via telehealth is feasible and may improve QOL and advance care planning. Overall treatment effects were small and suggest opportunities to improve both the intervention and implementation. Trial Registration:ClinicalTrials.gov Identifier: NCT03076671.

Background: We tested a novel hospice-specific patient decision aid to determine whether the decision aid could improve hospice knowledge, opinions of hospice, and decision self-efficacy in making decisions about hospice. Methods: Two patient-level randomized studies were conducted using two different cohorts. Recruitment was completed from March 2019 through May 2020. Cohort #1 was recruited from an academic hospital and a safety-net hospital and Cohort #2 was recruited from community members. Participants were randomized to review a hospice-specific patient decision aid. The primary outcomes were change in hospice knowledge, hospice beliefs and attitudes, and decision self-efficacy Wilcoxon signed rank tests were used to evaluate differences on the primary outcomes between baseline and 1-month. Participants: Participants were at least 65 years of age. A total of 266 participants enrolled (131 in Cohort #1 and 135 in Cohort #2). Participants were randomized to the intervention group (n = 156) or control group (n = 109). The sample was 74% (n = 197) female, 58% (n = 156) African American and mean age was 74.9. Results: Improvements in hospice knowledge between baseline and 1-month were observed in both the intervention and the control groups with no differences between groups (.43 vs .275 points, P = .823). There were no observed differences between groups on Hospice Beliefs and Attitudes scale (3.29 vs 3.08, P = .076). In contrast, Decision Self-Efficacy improved in both groups and the effect of the intervention was significant (8.04 vs 2.90, P = -.027). Conclusions: The intervention demonstrated significant improvements in decision self-efficacy but not in hospice knowledge or hospice beliefs and attitudes.

Een kind verliezen aan kanker verhoogt het risico op verminderde eigenwaarde bij de achtergebleven broers en/of zussen. Daarnaast hebben de ouders vaak te kampen met depressieve symptomen en gaan zij op een andere manier communiceren met hun kinderen. Maar er is nog maar weinig onderzoek gedaan naar de gezinsfactoren die gerelateerd zijn aan de eigenwaarde van een kind dat een broer of zus aan kanker heeft verloren. Daarom hebben wij onderzoek gedaan naar: (a) verschillen in de depressieve symptomen van de ouders, de communicatie tussen ouder en kind, de eigenwaarde van de broer/zus in gezinnen die een kind hadden verloren en gezinnen in de controlegroep; en (b) de indirecte effecten van de depressieve symptomen van de ouders en de kwaliteit van de communicatie op rouw en de eigenwaarde van de broer/zus. Gezinnen van een kind dat drie tot twaalf maanden daarvoor is overleden aan kanker konden zich aanmelden voor de studie. Na de aanmelding hebben deze gezinnen (n = 72) en de controlegezinnen van klasgenoten (n = 58) thuis een vragenlijst ingevuld (T1). 48 Gezinnen in de onderzoeksgroep en 45 gezinnen in de controlegroep hebben deelgenomen aan de follow-up na 1 jaar (T2). Vergeleken met de controlegroep hadden de moeders in de onderzoeksgroep op T1 en T2 meer depressieve symptomen, maar de vaders niet. De broers/zussen uit de onderzoeksgroep maakten melding van slechtere communicatie met de moeder, vergelijkbare communicatie met de vader en van een gelijk niveau van eigenwaarde vergeleken met de controlegroep. De cross-sectionele en longitudinale seriële mediatiemodellen voor de moeders waren significant. De moeders uit de onderzoeksgroep hadden een groter risico op depressieve symptomen, wat in de loop van de tijd een nadelig effect had op de eigenwaarde van de kinderen door de verstoorde communicatie tussen moeder en kind. De steekproef met vaders was klein, maar het cross-sectionele model was niet-significant. Moeders en vaders kunnen op andere manieren rouwen en hebben daarom misschien baat bij verschillende therapeutische benaderingen. Gezinsgerichte interventies zouden gericht moeten zijn op de emotionele aanpassing en communicatie van de moeders, zodat de eigenwaarde van de broer of zus verbetert. Ook zouden behandelaars andere steunbronnen moeten aanboren voor betere adaptieve uitkomsten van de broers en zussen.

OBJECTIVE:The aim of this study was to examine the emotional well-being of pediatric brain tumor survivors (PBTS) from the perspective of children's self-reports and parents' reports relative to matched comparison peers (COMP) and their parents. It was hypothesized that PBTS would self-report more depression symptoms, loneliness, and lower self-concept than COMP. We also hypothesized that mothers and fathers of PBTS would report more internalizing symptoms and lower total competence for their children. Age and sex effects were examined in exploratory analyses.METHODS:Families of 187 PBTS and 186 COMP participated across 5 sites. Eligible children in the PBTS group were 8-15 years of age and 1-5 years post-treatment for a primary intracranial tumor without progressive disease. COMP were classmates matched for sex, race, and age.RESULTS:PBTS self-reported lower scholastic, athletic, and social competence, but not more depression, loneliness, or lower global self-worth than COMP. Parents of PBTS reported more internalizing symptoms and lower total competence than parents of COMP. With few exceptions, group differences did not vary as a function of child age and sex.CONCLUSION:PBTS reported diminished self-concept in scholastic, athletic, and social domains, while their parents reported broader challenges with internalizing symptoms and total competence. Discrepancies between self-report and parent report require further study to inform targeted interventions for PBTS. Screening survivors for emotional challenges in follow-up clinic or in school setting may help with the allocation of psychosocial support and services for PBTS and their families.

Objectives. We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. Methods. Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). Results. Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: r(pb) = 0.27; p = 0.02; fathers: r(pb) = 0.32; p = 0.02; siblings: r(pb) = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24;p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R-2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R 2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R-2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). Significance of results. Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.

OBJECTIVES:Patient-reported outcome (PRO) data are critical in understanding treatments from the patient perspective in cancer clinical trials. The potential benefits and methodological approaches to the collection of PRO data after treatment discontinuation (eg, because of progressive disease or unacceptable drug toxicity) are less clear. The purpose of this article is to describe the Food and Drug Administration's Oncology Center of Excellence and the Critical Path Institute cosponsored 2-hour virtual roundtable, held in 2020, to discuss this specific issue.METHODS:We summarize key points from this discussion with 16 stakeholders representing academia, clinical practice, patients, international regulatory agencies, health technology assessment bodies/payers, industry, and PRO instrument development.RESULTS:Stakeholders recognized that any PRO data collection after treatment discontinuation should have clearly defined objectives to ensure that data can be analyzed and reported.CONCLUSIONS:Data collection after discontinuation without a justification for its use wastes patients' time and effort and is unethical.

ObjectiveThe Social Problem-Solving Inventory-Revised (SPSI-R) is a widely used instrument to assess problem-solving ability. This study examined the factor structure of the 52-, 25-, and 10-item versions of the SPSI-R and assessed factorial invariance across English- and Spanish-speaking participants. In addition, the internal consistency, test-retest reliability and sensitivity to detect change in problem-solving skills over time were assessed across the three different versions of the SPSI-R.MethodsData from three randomized controlled trials, in which caregivers of children with cancer (N = 1,069) were assigned to either a problem-solving skills intervention (N = 728) or a control condition (N = 341), were combined. The SPSI-R was administered at baseline (T1) and immediately post intervention (T2). Reliability and multigroup analyses were performed with confirmatory factor analysis (CFA). Sensitivity to change analyses were performed using repeated measures ANOVA.ResultsConfirmatory factor analysis at T1 showed good fit statistics and internal consistency for the 52- and the 25-item versions, but not for the 10-item version. Factorial invariance was demonstrated across time (T1-T2) and language (Spanish-English) for both the 52- and 25-item versions. Adequate sensitivity to change over time was shown.ConclusionThe 52- and 25-item versions of the SPSI-R appear reliable and valid for assessment of problem-solving skills in English- and Spanish-speaking caregivers of children with newly diagnosed cancer. The 25-item SPSI-R can be used as a short version measuring problem-solving ability; the 10-item version cannot be considered a reliable measure for this population.

A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings. Thus, we examined: (a) differences in parental depressive symptoms, parent-child communication, and sibling self-worth between bereaved and nonbereaved families and (b) indirect effects of parental depressive symptoms and communication quality on the association between bereavement and sibling self-worth. Bereaved parents and siblings were recruited 3-12 months after a child's death from cancer. Bereaved (n = 72) and nonbereaved families of classmates (n = 58) completed home-based questionnaires upon enrollment (T1), and 48 bereaved and 45 nonbereaved families completed 1-year follow-up (T2). Relative to controls at T1 and T2, bereaved mothers, but not fathers, reported more depressive symptoms. Bereaved siblings reported poorer maternal and similar paternal communication, and similar levels of self-worth compared to controls. Both cross-sectional and longitudinal serial mediation models for mothers were significant. Bereaved mothers were at greater risk for depressive symptoms, which adversely affected sibling self-worth over time through disrupted mother-child communication. The father sample was limited, but the cross-sectional model was nonsignificant. Mothers and fathers may grieve differently and may require different therapeutic approaches. Family-centered interventions should target bereaved mothers' emotional adjustment and communication to enhance sibling self-worth. Additionally, clinicians should bolster other sources of support for bereaved siblings to promote adaptive outcomes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Background Four multisite randomized clinical trials of > 1400 caregivers of children newly diagnosed with cancer showed that the Bright IDEAS (BI) paradigm of problem-solving skills training is an acceptable and efficacious approach to alleviating the high levels of distress they experience. To facilitate providing evidence-based caregiver support as recommended in the pediatric oncology standards of care, the project described here was designed to disseminate BI to 200 psychosocial professionals. Procedure We partnered with the Children's Oncology Group (COG), Association of Pediatric Oncology Social Workers (APOSW), Association of Pediatric Hematology/Oncology Nurses (APHON), and special interest group in pediatric hematology/oncology of the Society for Pediatric Psychology (SPP). Membership surveys revealed substantial enthusiasm for training in BI. We structured training to include review of the evidence base for BI, role plays, and strategies for implementation at individual sites. Four conference calls designed to enhance implementation were held one, two, three, and five months after training. Results Ten 1.5-day workshops were held in conjunction with annual meetings of COG, APOSW, APHON, and SPP. A total of 209 psychosocial clinicians from 134 sites were trained. Evaluations were highly favorable. Trainees had provided BI to 545 individuals as of the last conference call. Conclusions Initial dissemination goals were met. BI is now available at numerous pediatric oncology centers, but it has not become part of routine care. Future work focused on implementation might consider top-down approaches that include direct communication with pediatric oncologists and hospital leaders about the benefits of incorporating this evidence-based intervention systemically.

BackgroundDespite efforts to widely disseminate interventions designed to increase access to quality supportive care to pediatric cancer patients and their families, many of these interventions fail to meet expectations once deployed in real-life clinical settings. This study identifies the functions and forms of Bright IDEAS: Problem-Solving Skills Training, an evidence based psychosocial intervention for caregivers of children recently diagnosed with cancer, to identify pragmatic program adaptations in its real-world clinical implementation. We compare intervention adoption before and after adaptations to the Bright IDEAS training program as part of a national training program designed to disseminate the intervention.Methods209 pediatric psychosocial oncology practitioners representing 134 unique institutions were trained during 10 in-person 8-hour workshops (2015-2019). Functions and forms of Bright IDEAS were identified, and adaptations made to the training agenda and curriculum based on practitioner feedback following implementation in local institutions. Mixed method evaluation included longitudinal surveys at 6- and 12-months post training; and qualitative interviews among a subgroup of practitioners (N = 47) to understand and compare perspectives on intervention adoption and barriers to implementation before and after adaptations to the Bright IDEAS training program. The RE-AIM framework was used to guide dissemination evaluation.ResultsA total of four adaptations were tailored to the identified forms of the intervention: case studies; pre-training reading materials; training videos; and letters of institutional support from primary supervisor. Pre- and post-training adaptations to the Bright IDEAS training program were mapped to RE-AIM constructs. Quantitative findings demonstrate that adaptations appeared to improve adoption and usage overall.ConclusionThis study provides insight into how contextual factors influence psychosocial practitioners' capacity to adopt, implement, and maintain Bright IDEAS in the clinical setting. This study demonstrates the use of real-time stakeholder feedback to guide intervention translation from research to practice settings.

Objective: To assess the interaction of health literacy and a shared intervention concerning decision quality in patients considering the destination therapy of left ventricular assist device (DT LVAD) implantation. Background: Evidence is limited for the use of decision aids by patients with low health literacy and with life-threatening illnesses. Methods: We performed a secondary analysis of the DECIDE-LVAD Trial, a randomized, stepped-wedge trial conducted from 2015-2017 in the United States. The intervention was the integration of a formal shared decision-making intervention. The main outcome was decision quality as measured by LVAD knowledge and values-treatment concordance. Two components of health literacy were measured by the Rapid Estimate of Adult Literacy in Medicine and Subjective Numeracy Scale instruments. Results: Of the 228 patients studied, 44% (n = 101) received the formal shared decision -making intervention, and half had low health literacy. Knowledge of LVAD improved for patients with low literacy in the intervention group compared to the control group: the difference in increased knowledge score was 10.6%; P = 0.04. Values-treatment concordance improved significantly for patients with low literacy in the intervention group compared to the control group: the median improvement in values-treatment correlation coefficient was 0.43; P = 0.03. These benefits were not significant in those with adequate literacy (n = 171). Patients with low numeracy (n =94) did not show significant improvements in either measure of decision quality, and patients with adequate numeracy (n = 134) showed improvement in LVAD knowledge but not in values-treatment concordance. Conclusions: Patients considering DT LVAD implantation with low literacy showed improvement in decision quality after the integration of a shared decision-making intervention. (J Cardiac Fail 2022;28:1318-1325)

Assessment of caregiver needs is a recommended standard of care in pediatric oncology. Caregivers of pediatric brain tumor survivors (PBTS) are a subgroup that may be at highest psychosocial risk. This study examined psychosocial functioning of caregivers of PBTS in comparison to caregivers of youth without cancer history. We hypothesized that caregivers of PBTS would exhibit more psychological symptoms, higher caregiver burden, and lower perceptions of social support than caregivers of comparison youth.

BACKGROUND:Pain is a major concern among patients with advanced cancer and their family caregivers. Evidence suggests that pain coping skills training interventions can improve outcomes, however they have rarely been tested in this population. AIM:To test the efficacy of a caregiver-guided pain coping skills training intervention. The primary outcome was caregiver self-efficacy for helping the patient manage pain. DESIGN:A randomized controlled trial compared the intervention to an enhanced treatment-as-usual control. Dyads in both conditions received pain education, and those in the intervention received three sessions of pain coping skills training. Caregiver outcomes (self-efficacy; caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy, pain intensity and interference, psychological distress) were collected at baseline and post-intervention. SETTING/PARTICIPANTS:Two hundred two patients with stage III-IV cancer and pain and their family caregivers were enrolled from four outpatient oncology clinics and a free-standing hospice/palliative care organization. RESULTS:Compared to those in the control arm, caregivers in the intervention reported significant increases in caregiving satisfaction (p < 0.01) and decreased anxiety (p = 0.04). In both conditions, caregivers reported improvements in self-efficacy, and patients reported improvements in self-efficacy, pain severity and interference, and psychological distress. CONCLUSIONS:This is the first study to test a pain coping skills intervention targeted to patients and caregivers facing advanced cancer. Findings suggest that pain education provides benefits for patients and caregivers, and coping skills training may be beneficial for caregivers. Further research is needed to optimize the benefits of education and pain coping skills training for improving cancer pain outcomes.Trial registration: ClinicalTrials.gov NCT02430467, Caregiver-Guided Pain Management Training in Palliative Care.

In stepped wedge (SW) designs, differing cluster-level characteristics or individual-level covariate distributions that differ by cluster can lead to imbalance by treatment arm and potential confounding of the treatment effect. Adapting a method used in cluster-randomized trials, we propose a covariate-constrained randomization method to be used in SW designs. First, we define a balance metric to be calculated for all possible randomizations of cluster order for a given SW design. The resulting distribution of this balance metric across all possible randomizations is used to select a candidate set of randomizations with acceptable covariate balance. One cluster order is selected at random from this candidate set to be used as the cluster order for treatment implementation. In a simulation study, we implement the covariate-constrained randomization procedure and compare treatment effect estimation, type I error, and power under varying SW design and confounding settings, and using multiple analysis methods. We observed optimal statistical properties when the balance metric was used to exclude a small set of potential randomizations with the highest level of imbalance, and when analysis methods were adjusted for the potential confounders. The covariate-constrained randomization was most beneficial in settings with a small number of clusters and in the presence of cluster-level confounding.

Background Bright IDEAS: Problem-Solving Skills Training (Bright IDEAS), a psychosocial intervention, has shown to improve problem-solving skills and reduce emotional distress in caregivers of children recently diagnosed with cancer. Though efforts have been made to scale up cancer control interventions, there are limited data assessing the adoption of Evidence-Based Cancer Control Programs (EBCCP) into clinical practice. This study describes the barriers and facilitators to implementation experienced by practitioners trained to use Bright IDEAS in their clinical settings. Methods A total of 209 Pediatric psychosocial oncology practitioners were trained through 10 workshops. Adaptations were made to the training agenda and curriculum based on practitioner feedback following implementation in local institutions. Practitioners were interviewed to understand their training experience and gain their perspective on the effectiveness of delivering Bright IDEAS in the clinical setting. The RE-AIM framework was used to guide the evaluation process we employed to assess the effectiveness of this national effort to disseminate Bright IDEAS. Results Interviews were conducted with 47 practitioners. Practitioners in the pre-adaptation group reported the identification of a particular profile of a client as a facilitator to intervention use. Additionally, perceived rigidity of the protocol, lack of consistency in intervention use with clients, feelings of being overwhelmed by the client as rationale for lack of interest, and lack of multiple trained practitioners at institutions were identified as barriers to intervention use. Practitioners in the post-adaptation group reported similar identification of a profile for an appropriate client for the intervention, more usage of Bright IDEAS materials, implementation across multiple clinical settings, and expressed continued commitment to intervention use as well as discussion of internal training for colleagues. Conclusions This study provides insight into how psychosocial practitioners adopt, implement, and maintain Bright IDEAS in the clinical setting and identified important considerations and needs for both practitioners and larger health care systems. It also provides some cautions to those who wish to promulgate evidence-based interventions.

OBJECTIVEBright IDEAS (BI) is a problem-solving skills training (PSST) program that has been demonstrated in earlier randomized controlled trials (RCTs) to be an effective and specific intervention for improving problem-solving skills and reducing negative affect in caregivers of children with cancer. The objectives of this study were to (a) offer an approach to defining meaningful treatment response and to determine the rates of responsivity to PSST; and (b) identify characteristics of PSST responders and nonresponders.METHODSData from 154 mothers receiving the BI intervention were analyzed. Drawing on the literature on minimal clinically important differences, two criteria for determining responsivity were calculated for the primary outcome of problem-solving skills: (a) The reliable change index (RCI) based on group data, and; (b) The effect size (ES) of each participant's pre/postintervention change score as a function of the group's baseline SD.RESULTSThirty-three percent of the sample met both responsivity criteria immediately posttreatment (39% at follow-up) and 38% (39% at follow-up) met neither. An additional 29% demonstrated a small or greater ES (≥ 0.2) but did not meet the RCI criteria, suggesting possible benefit. The single consistent predictor of responsivity was participants' pretreatment problem-solving skills, with lower skills at baseline predicting greater improvement (p < .001).CONCLUSIONSThese findings highlight the need to go beyond group data in interpreting RCTs and to incorporate measures of meaningful treatment response. Our ability to predict and screen for meaningful treatment response is critical to more precise targeting, enhanced outcomes, and better resource allocation.

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families ( N = 88) were recruited from three sites 3–12 months ( M = 11.57, SD = 3.48) after their child’s death from cancer. One sibling per family aged 8–17 years ( M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings’ grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling’s death ( t (75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean ( t (83) = 4.44, p ≤ .001 ( M = 56.01 ± 12.48), with 39% ( n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth ( t (79) = − 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief ( t (80) = − 2.08, p = .04 and t (80) = − 2.24, p = .028, respectively) and grief-related growth ( t (80) = − 2.01, p = .048 and t (80) = − 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.

Objectives: To use electronic health record data from the first 2 hours of care to derive and validate a model to predict hypotensive septic shock in children with infection. Design: Derivation-validation study using an existing registry. Setting: Six emergency care sites within a regional pediatric healthcare system. Three datasets of unique visits were designated: 1) training set (five sites, April 1, 2013, to December 31, 2016), 2) temporal test set (five sites, January 1, 2017, to June 30, 2018), and 3) geographic test set (sixth site, April 1, 2013, to June 30, 2018). Patients: Patients in whom clinicians were concerned about serious infection from 60 days to 18 years were included; those with septic shock in the first 2 hours were excluded. There were 2,318 included visits; 197 developed septic shock (8.5%). Interventions: Lasso with 10-fold cross-validation was used for variable selection; logistic regression was then used to construct a model from those variables in the training set. Variables were derived from electronic health record data known in the first 2 hours, including vital signs, medical history, demographics, and laboratory information. Test characteristics at two thresholds were evaluated: 1) optimizing sensitivity and specificity and 2) set to 90% sensitivity. Measurements and Main Results: Septic shock was defined as systolic hypotension and vasoactive use or greater than or equal to 30 mL/kg isotonic crystalloid administration in the first 24 hours. A model was created using 20 predictors, with an area under the receiver operating curve in the training set of 0.85 (0.82-0.88); 0.83 (0.78-0.89) in the temporal test set and 0.83 (0.60-1.00) in the geographic test set. Sensitivity and specificity varied based on cutpoint; when sensitivity in the training set was set to 90% (83-94%), specificity was 62% (60-65%). Conclusions: This model predicted risk of septic shock in children with suspected infection 2 hours after arrival, a critical timepoint for emergent treatment and transfer decisions. Varied cutpoints could be used to customize sensitivity to clinical context.

This cross-sectional study evaluates whether the Parent-Reported Outcomes of Symptoms system identifies more symptoms than clinicians do among children with severe neurological impairment.

Background: Bright IDEAS problem-solving skills training (BI) is an evidence-based behavioral intervention that has been utilized extensively with caregivers of children recently diagnosed with cancer. Considerable evidence has shown that BI is acceptable to caregivers of children recently diagnosed with cancer, and improvements in problem-solving skills mediate reduced symptoms of distress. Procedures: A slightly modified version of BI was offered to caregivers of children with sickle cell disease (SCD) in a two-site pilot feasibility trial. BI was modified to reduce barriers to care, logistical challenges, and stigma associated with receiving behavioral health services. Our goal was to establish high rates of recruitment and retention among caregivers of children with SCD. Recruitment was acceptable (94%; N = 72) and retention reasonable (49%) across both sites with 35 caregivers successfully completing the BI program. Results: Results showed that caregivers of children with SCD, who successfully completed the BI program reported, significant improvements in problem-solving skills immediately and three months after intervention completion. Interestingly, initial levels of distress were low with few caregivers reporting clinically significant levels of distress; distress remained low over time. Conclusions: Findings are discussed in the context of psychosocial screening and resilience of caregivers of children with SCD.