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Background: Clinician empathy positively impacts patient outcomes. Few studies have assessed the effects of different types of empathic expression. Objective: To describe how families respond when clinicians express empathy in different ways. Design: Prospective, mixed-methods cohort. Setting/Subjects: English and interpreted pediatric inpatient care conferences at a U.S. quaternary hospital between January 1, 2018 and January 1, 2021. Measurements: Directed content analysis of clinician empathic statements and family responses. Results: Of 29 patient-family dyads, 11 (39%) used language interpretation. In response to 80 clinician empathic statements, families expressed agreement or shared more 84% (67/80) of the time. Families shared more about their perspective in response to explore statements 71.4% (10/14) of the time, in response to validate statements 61% (17/28) of the time, and in response to respect/support statements 39% (11/28) of the time. Conclusion: Certain types of empathic statements may be more effective at prompting families to share more about their perspective, a key element of shared decision-making. [ABSTRACT FROM AUTHOR]

Objective: Adolescents and young adults (AYAs) with cancer are at high risk of negative psychosocial outcomes. Promoting Resilience in Stress Management (PRISM), a novel, brief, skill-based intervention, has demonstrated efficacy in improving psychosocial well-being for AYAs. We utilized data from a recent randomized trial of PRISM versus usual care (UC) to categorize and explore group differences in change trajectories of patient reported outcomes (PROs) over time.Methods: One hundred English-speaking AYAs (aged 12-25 years old) with cancer were randomized to PRISM versus UC. At enrollment and 6 months later, AYAs completed validated PROs measuring resilience (Connor-Davidson Resilience Scale [CDRISC-10]), hope (Hope Scale), benefit finding (Benefit and Burden Scale for Children), cancer-specific quality of life (Pediatric Quality of Life [PedsQL] Cancer Module), and distress (Kessler-6). Patient response trajectories were categorized as "improved," "consistently well," "consistently at risk," or "deteriorated" using minimal clinically important differences (MCIDs) or established measure cutoffs for all PROs. Positive response trajectories consisted of the first two categories ("improved" and "consistently well"), and negative response trajectories consisted of the latter two categories ("consistently at risk" and "deteriorated").Results: Across all PROs, more patients in the PRISM arm "improved" in psychosocial well-being over time, and fewer PRISM recipients "deteriorated" over time. Across all PROs, a greater proportion of PRISM participants (vs UC) experienced positive response trajectories. Across all PROs, a greater proportion of UC participants experienced negative response trajectories.Conclusions: PRISM shows evidence of both a prevention effect and an intervention effect. Thus, PRISM may serve as a viable prevention and early intervention model for psychosocial care. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults (AYAs) with cancer are at risk for poor psychosocial outcomes. This study aimed to determine whether a novel intervention targeting resilience resources would improve patient-reported resilience, quality of life, and psychological distress.Methods: In this parallel, phase 2 randomized controlled trial, English-speaking AYAs (12-25 years old) with cancer were randomized to the Promoting Resilience in Stress Management (PRISM) intervention or usual care (UC). PRISM is a brief, skills-based intervention targeting stress management, goal setting, cognitive reframing, and meaning making. Participants completed surveys at enrollment and 6 months. Mixed effects regression models evaluated associations between PRISM and the primary outcome (10-item Connor-Davidson Resilience Scale scores) and secondary outcomes (generic and cancer-related quality of life [Pediatric Quality of Life modules], psychological distress [Kessler-6], and anxiety/depression [Hospital Anxiety and Depression]) at 6 months.Results: Ninety-two AYAs were enrolled, were randomized, and completed baseline surveys (48 in the PRISM group and 44 in the UC group); 73% were 12 to 17 years old, and 62% had leukemia or lymphoma. Attrition was primarily due to medical complications and/or death; 36 PRISM participants and 38 UC participants completed 6-month surveys. PRISM was associated with improved resilience (+3.0 points; 95% confidence interval [CI], 0.5-5.4; P = .02) and cancer-specific quality of life (+9.6; 95% CI, 2.6-16.7; P = .01) and reduced psychological distress (-2.1; 95% CI, -4.1 to -0.2; P = .03) but not generic quality of life (+7.2; 95% CI, -0.8 to 15.2; P = .08). Although anxiety was similar between the groups, 2 PRISM participants (6%) and 8 UC participants (21%) met the criteria for depression at 6 months (odds ratio, 0.09; 95% CI, 0.01-1.09; P = .06).Conclusions: PRISM was associated with improved psychosocial outcomes in comparison with UC, suggesting that brief, skills-based interventions for AYAs may provide a benefit. [ABSTRACT FROM AUTHOR]

We aimed to explore the predictive value of screening for distress alone, hope alone, or a combination of both. In a multicenter prospective study, 37 English-speaking adolescents and young adults with cancer and 40 parents completed validated instruments at diagnosis (“baseline”) and 3–6 months later (“follow-up”). Correlated regression models described associations. Within each instrument, baseline and follow-up scores were associated. However, only a composite hope/distress score predicted all three patient-centered outcomes. Multidimensional screens incorporating positive and negative psychosocial constructs may predict patient-centered outcomes better than isolated, single-construct instruments. [ABSTRACT FROM PUBLISHER]

Context: Adolescents and young adults (AYAs) with cancer report worse health-related quality of life (HRQOL) than other age groups. Symptom burden is a modifiable predictor of HRQOL.Objectives: The objective of this study was to identify which symptoms are most burdensome to AYAs with advanced cancer.Methods: In this observational study, English-speaking individuals aged 12-25 years undergoing treatment for advanced cancer completed assessments of symptom burden (Memorial Symptom Assessment Scale) and HRQOL (Pediatric Quality of Life Inventory Generic Form and Cancer Module; minimal clinically important difference 4.4). We dichotomized participants as having low (<7) or high (≥7) symptom prevalence. Mixed regression models estimated HRQOL differences between groups. For individual symptoms, unadjusted mixed models estimated HRQOL reductions.Results: N = 58 AYAs completed baseline surveys. The median age was 17 years (IQR 15-19), 58% were male, 59% identified as white, and 44% were diagnosed with leukemia/lymphoma. High symptom prevalence was associated with a mean generic HRQOL 7 points lower (95% CI: -11, -3; P < 0.01) and cancer-specific HRQOL score 12 points lower (95% CI: -17, -7; P < 0.01) than low symptom prevalence. The most prevalent symptoms were fatigue (71%), pain (58%), and difficulty sleeping (58%). Fatigue (-8), difficulty concentrating (-7), and mouth sores (-6) were associated with the greatest generic HRQOL score reductions. Dysphagia (-12), difficulty concentrating (-12), and sadness (-11) were associated with the greatest cancer-specific HRQOL score reductions.Conclusion: The symptom experience among AYAs with advanced cancer is unique. Separate evaluation of AYA's symptoms may optimize management and improve HRQOL. [ABSTRACT FROM AUTHOR]

Background: Hirschsprung disease is one of the most common congenital anomalies that affect colorectal function. Rectal biopsy demonstrating the absence of ganglion cells in the affected bowel is the gold standard for diagnosis. Suction and incisional rectal biopsies are appropriate methods for obtaining diagnostic tissue. The goal of this study is to determine if any differences in adequacy exist between suction and incisional rectal biopsies at our institution. Methods: We conducted a retrospective review of suction and incisional rectal biopsies for inadequacy per procedure at a tertiary pediatric hospital. Each procedure for rectal biopsy was also evaluated by a number of biopsies per procedure. We used a two-sample test of proportions to compare the inadequacy of suction vs. incisional biopsies. Results: 133 rectal suction biopsy procedures (227 biopsies) and 125 incisional biopsy procedures (140 biopsies) were analyzed. In patients 6 months of age and older, the percentage of inadequate procedures was substantially higher in the suction biopsy group (24.1% vs 0.9%, p < 0.01). Conclusions: A substantially higher proportion of inadequacy was found in the suction rectal biopsy group compared to the incisional cohort among the older patient cohort, suggesting incisional biopsies should be strongly considered as the primary rectal biopsy method in patients older than 6 months. [ABSTRACT FROM AUTHOR]

Background: The United States organ allocation policies prioritize kidney–pancreas and other multiorgan candidates above pediatric kidney‐alone candidates, but the effects of these policies are unclear. Methods: We used OPTN data to describe trends in multiorgan and kidney–pancreas transplantation and identify 377 next‐sequential pediatric kidney‐alone candidates between 4/1/2015 and 10/31/2019 for individual‐level analysis. Results: Eleven percent of all kidneys were allocated as part of a multiorgan or kidney–pancreas transplant and 6% of pediatric kidney candidates were impacted. Pediatric next‐sequential candidates accrued a median of 118 days (IQR 97–135 days) of additional wait time, and this was significantly longer for children who were Hispanic (p =.02), blood type B or O (p =.01), or had a cPRA ≥20% (p <.01). Eight pediatric next‐sequential candidates (2%) were removed from the waitlist due to death or "too sick to transplant." 63% were transplanted with a kidney with a higher KDPI than the original multiorgan match (p <.01). Donor service areas with higher volumes of kidney–pancreas transplants had significantly longer additional wait times for pediatric next‐sequential candidates (p =.01). Conclusions: Current allocation policy results in longer waiting times and higher KDPI kidneys for pediatric kidney candidates. As multiorgan transplant volume is increasing, further consideration of allocation policy is necessary to maximize equality and utility. [ABSTRACT FROM AUTHOR]

Purpose: A diagnosis of cancer often derails an individual's goals. The purpose of this mixed-methods analysis was to describe the evolution of adolescent and young adult (AYA)-reported goals in the year after a diagnosis of new or advanced cancer. Methods: As part of the Promoting Resilience in Stress Management (PRISM) phase 2 randomized controlled trial, AYAs with cancer (ages 12–25 years) were asked at baseline, 6 months, and 12 months: "Please give an example of a goal you hope to accomplish over the next month/year." We used content analysis to categorize goals as follows: life milestones, physical health, mental/emotional health, cancer specific, and hobbies/interests. We summarized goal categories at each time point: for the entire cohort, by baseline diagnosis status (new vs. advanced cancer), treatment status (on-therapy vs. off-therapy), and baseline health-related quality of life (high vs. low). Results: Eighty-six participants completed the study and were included in the analysis (control: n = 41, PRISM: n = 45); 69 reported their goals at 6 months, and 54 at 12 months. Participants submitted a total of 169 goals at baseline, 148 at 6 months, and 126 at 12 months. At baseline, cancer-specific goals were most common for the short-term (35%), whereas milestone goals were most common for the long-term (46%). At 6 months, milestone goals were most common in both short- (38%) and long-term (51%) categories. A similar pattern was seen at 12 months. Conclusion: AYAs' goals change over the first year of their cancer experience, with a shift in short-term goals from cancer-specific goals at baseline to milestone goals at later time points. ClinicalTrials.gov (NCT02340884). [ABSTRACT FROM AUTHOR]

Background: Parents experience high distress following their child's diagnosis of cancer. We previously tested two delivery models (group and one-on-one) of the "Promoting Resilience in Stress Management for Parents" (PRISM-P) intervention in a randomized trial: one-on-one delivery improved resilience and benefit finding at three months when compared to usual care (UC). Objective: The objective of this analysis was to evaluate quantitative and qualitative outcomes at six months. Design: In this single-center, phase 2, parallel, 1:1:1 randomized trial conducted December 2016 to December 2018, English-speaking parents with a 2–24 year-old child diagnosed with new cancer were randomly assigned to UC, one-on-one, or group PRISM-P, a brief, skill-based curriculum targeting stress management, goal setting, cognitive reframing, and meaning making. We collected parent-reported outcomes (resilience, benefit finding, and psychological distress) at baseline and three and six months. We applied linear mixed-effects regression models to examine six-month outcomes among all participants and conducted directed content analyses of exit interviews with the first 12 parents to complete each study arm. Results: The 94 participating parents were median aged 35–38 years and predominantly white, college-educated mothers. At six months, there was no statistically significant difference in parent-reported outcomes. Exit interviews (n = 36) suggested that PRISM-P was highly valued: 100% of interviewed recipients recommended it for other parents. Most suggested more coaching would help them retain skills, and almost all endorsed a combined one-on-one and group program. Conclusions: Although the PRISM-P benefits observed at three months were not sustained for six months, all interviewed parents found it valuable. Additional opportunities to strengthen and sustain resilience resources include longer follow-up, flexible format, and skill reinforcement. Trial Registration: NCT02998086. [ABSTRACT FROM AUTHOR]

Objective: In adolescents and young adults (AYAs) with cancer, we examined (1) the distribution and type of traumatic events (TEs) experienced prior to baseline assessment and (2) how a resilience intervention, Promoting Resilience in Stress Management (PRISM), impacted changes in patient-reported outcomes (PROs) for AYAs with and without TEs. Methods: AYAs (12–25 years) within 1–10 weeks of diagnosis of new malignancy or ever diagnosed with advanced cancer were enrolled and randomly assigned to usual care (UC) with or without PRISM. To assess TEs, we screened medical records for traditionally defined adverse childhood experiences (ACEs) and medical traumatic events. Age-validated PROs assessed resilience, benefit-finding, hope, generic health-related quality of life (QoL), cancer-specific QoL, depression, and anxiety at enrollment and 6 months later. We calculated effect sizes (Cohen's d) for PRISM vs. UC effect on PRO score change at 6 months for 1+ TEs and 0 TE groups. Results: Ninety-two AYAs enrolled and completed baseline surveys (44-UC, 48-PRISM; N = 74 at 6 months, 38-UC, 36-PRISM); 60% experienced 1+ TEs. PROs at baseline were similar across groups. PRISM's effect on score change was greater (Cohen's d ≥ 0.5) for the 1+ TE group on domains of benefit-finding and hope; and similar (d < 0.5) on domains of resilience, depression, anxiety, and both generic and cancer-specific QoL. Conclusions: In AYAs with cancer, TEs occurred at similar rates as the general population. PRISM may be particularly helpful for improving benefit-finding and hope for those who have experienced TEs. [ABSTRACT FROM AUTHOR]

Background: Studies of HRQoL after kidney transplant have yielded conflicting results. We sought to assess the impact of kidney transplant on HRQoL. Methods: We performed a retrospective study using the PedsQL3.0ESRD module during dialysis and at 3 and 12 months following kidney transplant in 56 recipients. For the entire cohort, we described HRQoL scores at each time point and used ANOVA models to test for associations between demographic and transplant‐related factors and post‐transplant scores. We used linear mixed models to investigate interactions between transplant and demographic and transplant‐related factors and to estimate differences between mean pre‐ and post‐transplant scores. Longitudinal changes in HRQoL were assessed by t test. Results: We found increases in all mean total scores, including subscales, at each assessed time period from dialysis to 3 months post‐transplant to 12 months post‐transplant. Post‐transplant total scores did not differ by gender, race, proximity to hospital, allograft source, or dialysis modality, but did differ by recipient age. Among participants with both pre‐ and post‐transplant observations, total scores increased for both recipients and parent‐proxies. Conclusions: This study affirms the association between kidney transplant and improvement in HRQoL in the first year following transplant. Future research should further explore outcomes over the longer‐term and factors contributing to HRQoL among this population. [ABSTRACT FROM AUTHOR]

Purpose: Despite health implications, sexual activity and substance use among adolescents and young adults (AYAs) receiving cancer treatment are understudied. Methods: AYAs 12–25 years of age participated in a randomized controlled trial testing the efficacy of a resilience intervention. They were fluent in English and either diagnosed with new cancer (NC) or advanced cancer (AC). At baseline and 6 months, participants self-reported sexual activity and substance use. We describe the percentage of AYAs who endorsed each behavior and a count of total behaviors endorsed by each respondent. We describe frequencies by sex/gender (male/female), age (<18/≥18), and disease status (AC/NC). Results: Participants (N = 92) were majority white/Caucasian (57%), 12–17 years old (73%), and diagnosed with leukemia/lymphoma (62%); 32% had AC. Responses were not associated with the intervention; hence, we summarized data from the whole cohort. At both time points, median behavior endorsed was 2. At baseline and follow-up, 87% and 81% endorsed at least 1 behavior: 13% and 15% were sexually active, 75% and 73% of whom used birth control inconsistently; and 22% and 22% reported drinking alcohol, 31% and 27% using prescription opioids/sedatives, 19% and 22% using other drugs, and 9% and 7% using tobacco. Young adults engaged in most behaviors more frequently than adolescents (e.g., 48% vs. 12% alcohol at baseline); males engaged in sexual activity more frequently than females (e.g., 20% vs. 5% sexually active at baseline); and AYAs with NC engaged in most behaviors more frequently than those with AC (18% vs. 0% sexually active at baseline). Conclusion: AYAs engage in sexual activity and substance use during cancer treatment. [ABSTRACT FROM AUTHOR]

Background: Reduced BMI is an absolute contraindication for lung transplantation (LTx) at most centers in the United States. The objective of this study was to quantify post-LTx survival of moderate to severely underweight patients with cystic fibrosis (CF) (BMI < 17 kg/m2) in the United States relative to normal-weight recipients with CF and other frequently transplanted patient cohorts.Methods: Using United Network for Organ Sharing Registry data (undergoing transplant from June 2005-November 2015), Kaplan-Meier estimates of median posttransplant survival were calculated for all patients with CF, COPD, and idiopathic pulmonary fibrosis (IPF), as well as low and normal weight CF subgroups. Cox regression modeling stratified according to transplant center assessed risk of posttransplant mortality in recipients with CF and a BMI < 17 kg/m2 compared with recipients with COPD (reference).Results: Median posttransplant survival (95% CI) for CF, COPD, and IPF was 7.9 (7.2-8.6), 5.9 (5.6-6.2), and 5.5 (5.2-5.8) years, respectively. Although an absolute decrease was noted in posttransplant survival for recipients with CF and a BMI < 17 kg/m2, compared with those with CF and a BMI ≥ 17 kg/m2 (7.0 years [4.5-7.9] vs 8.2 years [7.3-9.0]), Cox modeling found no increased mortality risk (adjusted hazard ratio, 1.09; 95% CI, 0.90-1.32; P = .38). There was no difference in posttransplant mortality between patients with CF and a BMI < 17 kg/m2 and recipients with COPD and all BMIs (adjusted hazard ratio, 1.04; 95% CI, 0.86-1.25; P = .71).Conclusions: Transplant recipients with CF and a BMI < 17 kg/m2 had posttransplant survival rates comparable to those of other groups frequently undergoing transplantation. BMI < 17 kg/m2 as a single risk factor in the CF population should not be treated as an absolute contraindication to LTx. [ABSTRACT FROM AUTHOR]

Introduction: Survivors of cancer are at risk for adverse mental and physical health outcomes. It is not well understood, however, how these outcomes are differentially experienced according to an individual's exposure to racism. This study sought to evaluate associations of race/ethnicity, and experiences of racism, with adverse health outcomes in survivors of cancer. Methods: Using the Behavioral Risk Factor Surveillance System database, data from 48,200 survivors between 2014 and 2020 were evaluated. Survey items included negative physical and emotional symptoms as a result of race‐based treatment. Outcomes of interest included days of poor mental and physical health, activity limitations, depression, and inadequate sleep. Associations using prevalence ratios were evaluated. Results: All historically marginalized racial/ethnic groups were more likely to experience at least one adverse health outcome compared with non‐Hispanic White survivors. Those who physically experienced racism were 2.1 (95% CI, 1.64–2.69) times as likely to report poor physical health, 3.51 (95% CI, 2.61–4.71) times as likely to report poor mental health, 2.14 (95% CI, 1.77–2.58) times as likely to report inadequate sleep, 2.33 (95% CI: 1.91–2.83) times as likely to report depression, and 1.42 (95% CI, 1.04–1.93) times as likely to report activity limitations compared with those who have not experienced racism. Similar associations were observed for emotionally experienced racism. Discussion: Racial inequities in health outcomes for survivors of cancer from marginalized racial/ethnic groups are well‐established. Experienced racism contributes to adverse health outcomes and widens these disparities. Improving outcomes for survivors of cancer may require screening for experienced racism. Plain Language Summary: Survivors of cancer from marginalized racial/ethnic populations are more likely to have poor mental and physical health than their non‐Hispanic White counterparts. Whether survivors from certain racial/ethnic populations of smaller size also have poorer health is less well understood.Generally, individuals who report experienced racism also report poor health, this association has not been studied in survivors of cancer.This study, from a national survey of survivors of cancer, describes disparities in health outcomes experienced by a variety of racial and ethnic populations. Our findings suggest racism is associated with poor mental and physical health in survivors of cancer. Marginalized survivors of cancer are more likely to report inadequate sleep, poor physical and mental health, limited physical activity, and a history of depression. Cancer survivors who have experienced racism are more likely to report adverse physical and mental health outcomes. [ABSTRACT FROM AUTHOR]

Background: Washington State was one of the first states to legalize recreational marijuana. Increased availability of marijuana may result in more unintentional pediatric exposure, which often presents as altered mental status with unknown cause.Objectives: To quantify unintentional pediatric marijuana exposures reported to the Washington Poison Center (WAPC) prior to and after legalization and commercial availability of recreational marijuana.Methods: Data were obtained from the WAPC database, toxiCALL®. Patients ≤ 9 years old with a reported marijuana exposure between July 2010 and July 2016 were included in the analysis. Patient and exposure characteristics were summarized and median exposure frequencies were calculated for the periods prior to and after legalization.Results: There were 161 cases meeting the inclusion criteria that occurred between July 2010 and July 2016. Of these, 130 (81%) occurred in the 2.5-year period after legalization of recreational marijuana in January 2013. The median age of exposed children was 2 years (range 0-9 years). Eighty-one percent of the exposures occurred in the child's own home. The number of exposures per month increased after recreational marijuana was legalized in November 2012, and increased further once recreational marijuana shops were legally allowed to open in July 2014.Conclusion: Reported unintentional pediatric marijuana exposure has increased in the state of Washington since recreational marijuana was legalized. As marijuana becomes more available, clinicians should be aware of the risk of unintentional pediatric marijuana exposure, and this should inform lawmakers regarding regulations around childhood exposure to marijuana. [ABSTRACT FROM AUTHOR]

Background Immunocompromised children might be predisposed to serious infections from human coronaviruses (HCoVs), including strains OC43, NL63, HKU1, and 229E; however, the virologic and clinical features of HCoV infection in immunocompromised children have not been compared to those in nonimmunocompromised children. Methods We retrospectively analyzed a cohort of children who presented to Seattle Children's Hospital and in whom HCoV was detected by a multiplex respiratory polymerase chain reaction assay of a nasal sample between October 2012 and March 2016. Lower respiratory tract disease (LRTD) was defined as possible or definite infiltrate seen in chest imaging, need for oxygen, or abnormal lung examination in conjunction with a physician diagnosis of LRTD. We used logistic regression modeling to evaluate risk factors for LRTD and LRTD that necessitated oxygen use (severe LRTD), including an immunocompromised state, in children with HCoV infection. Results The median ages of 85 immunocompromised and 1152 nonimmunocompromised children with HCoV infection were 6.3 and 1.6 years, respectively. The prevalence of LRTD and of severe LRTD did not differ greatly between the immunocompromised and nonimmunocompromised patients (22% vs 26% [LRTD] and 15% vs 11% [severe LRTD], respectively); however, in a multivariable model, an immunocompromised state was associated with an increased likelihood of severe LRTD (adjusted odds ratio, 2.5 [95% confidence interval, 1.2–4.9]; P =.01). Younger age, having an underlying pulmonary disorder, and the presence of respiratory syncytial virus were also associated with LRTD or severe LRTD in multivariable models. The risks of LRTD or severe LRTD did not differ among the children with different HCoV strains. Conclusions The presence of a copathogen and host factors, including an immunocompromised state, were associated with increased risk for severe LRTD. Recognizing risk factors for severe respiratory illness might assist in risk stratification. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults (AYAs) with cancer are at high risk of poor psychosocial outcomes, and evidence-based interventions designed to meet their psychosocial and communication needs are lacking. The main objective of this project is to test the efficacy of a new adaptation of the Promoting Resilience in Stress Management intervention for AYAs with Advanced Cancer (PRISM-AC). Methods/design: The PRISM-AC trial is a 2-arm, parallel, non-blinded, multisite, randomized controlled trial. 144 participants with advanced cancer will be enrolled and randomized to either usual, non-directive, supportive care without PRISM-AC ("control" arm) or with PRISM-AC ("experimental" arm). PRISM is a manualized, skills-based training program comprised of four 30–60 min, one-on-one sessions targeting AYA-endorsed resilience resources (stress-management, goal-setting, cognitive-reframing, and meaning-making). It also includes a facilitated family meeting and a fully equipped smartphone app. The current adaptation includes an embedded advance care planning module. English- or Spanish-speaking individuals 12–24 years old with advanced cancer (defined as progressive, recurrent, or refractory disease, or any diagnosis associated with < 50% survival) receiving care at 4 academic medical centers are eligible. Patients' caregivers are also eligible to participate in this study if they are able to speak and read English or Spanish, and are cognitively and physically able to participate. Participants in all groups complete surveys querying patient-reported outcomes at the time of enrollment and 3-, 6-, 9-, and 12-months post-enrollment. The primary outcome of interest is patient-reported health-related quality of life (HRQOL) and secondary outcomes of interest include patient anxiety, depression, resilience, hope and symptom burden, parent/caregiver anxiety, depression and health-related quality of life, and family palliative care activation. We will conduct intention-to-treat analysis to compare the group means of primary and secondary outcomes between PRISM-AC arm and control arm with regression models. Discussion: This study will provide methodologically rigorous data and evidence regarding a novel intervention to promote resilience and reduce distress among AYAs with advanced cancer. This research has the potential to offer a practical, skills-based curriculum designed to improve outcomes for this high-risk group. Trial registration: ClinicalTrials.gov Identifier NCT03668223, September 12, 2018. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved communication and clinical outcomes. We hypothesized that, when clinicians express empathy, families are more likely to deepen discussions, and that clinicians express less empathy in care conferences with language interpretation. METHODS: Prospective, mixed methods cohort study of English and interpreted audio-recorded transcripts of care conferences for pediatric patients with serious illness hospitalized at a single urban, quaternary medical institution between January 2018 and January 2021. Directed content analysis identified empathic opportunities, clinician empathetic statements or missed opportunities, and family responses. Clinician empathic statements were "buried" if immediately followed by more clinician medical talk. Descriptive analyses summarized demographics and codes. χ² analyses summarized differences among language interpretation and family responses. RESULTS: Twenty-nine patient-family dyads participated. Twenty-two (81%) family members were female. Eleven (39%) used language interpretation (8 Spanish, 2 Vietnamese, 1 Somali). Families created 210 empathic opportunities. Clinicians responded with unburied empathy 80 times (38%, no differences for English versus interpreted care conferences, P = .88). When clinicians buried empathy or missed empathic opportunities, families responded with alliance (agreement, gratitude, or emotional deepening) 14% and 15% of the time, respectively. When clinicians responded with unburied empathy, families responded with alliance 83% of the time (P < .01). CONCLUSIONS: Our study suggests that clinician empathic expression does not differ when language interpretation is used in pediatric care conferences. Clinicians often miss opportunities to express empathy, or they bury it by medical talk. Although unburied empathy created opportunities for relationship-building and family-sharing, buried empathy negatively impacted these domains similarlyto no empathic expression. [ABSTRACT FROM AUTHOR]

The last substantial description of gender discrimination and harassment described in the journal Pediatrics was in 2019. It is unclear whether the field has made progress toward its goal of equity. We aimed to describe: (1) the recent gender-equity climate according to women and men faculty in the department of pediatrics at a single, large academic center, and (2) institutional efforts to address persistent gender discrimination and harassment. In late 2020, we distributed an anonymous survey to all department faculty that included demographic data, a modified version of the Overt Gender Discrimination at Work Scale, questions about experiences/witnessed discriminatory treatment and sexual harassment, and if those experiences negatively affected career advancement. Of 524 pediatrics faculty, 290 (55%) responded. Compared with men, women more commonly reported gender discrimination (50% vs. 4%, P < .01) and that their gender negatively affected their career advancement (50% vs 9%, P < .01). More than 50% of women reported discriminatory treatment at least annually and 38% recognized specific sexist statements; only 4% and 17% of men reported the same (P < .01 for both). We concluded that a disproportionately low number of male faculty recognized the harassment female faculty experienced. In the 18 months since, our department and university have made efforts to improve salary equity and parity in leadership representation, created an anonymous bias-reporting portal, mandated bias training, and implemented new benchmarks of "professionalism" that focus on diversity. Although we acknowledge that culture change will take time, we hope our lessons learned help promote gender equity in pediatrics more broadly. [ABSTRACT FROM AUTHOR]

The effect of donor-recipient sex matching on long-term survival in pediatric heart transplantation is not well known. Adult data have shown worse survival when male recipients receive a sex-mismatched heart, with conflicting results in female recipients. We analyzed 5795 heart transplant recipients ≤18 yr in the Scientific Registry of Transplant Recipients (1990-2012). Recipients were stratified based on donor and recipient sex, creating four groups: MM (N = 1888), FM (N = 1384), FF (N = 1082), and MF (N = 1441). Males receiving sex-matched donor hearts had increased unadjusted allograft survival at five yr (73.2 vs. 71%, p = 0.01). However, this survival advantage disappeared with longer follow-up and when adjusted for additional risk factors by multivariable Cox regression analysis. In contrast, for females, receiving a sex-mismatched heart was associated with an 18% higher risk of allograft loss over time compared to receiving a sex-matched heart ( HR 1.18, 95% CI: 1.00-1.38) and a 26% higher risk compared to sex-matched male recipients ( HR 1.26, 95% CI: 1.10-1.45). Females who receive a heart from a male donor appear to have a distinct long-term survival disadvantage compared to all other groups. [ABSTRACT FROM AUTHOR]

BACKGROUND: Patients born with anorectal malformations (ARM) frequently have other congenital anomalies that are well-defined; however, limited data exist examining the relationship of ARM with malrotation. METHODS: A 10-year retrospective review was performed to examine all patients treated at a regional children's medical center with a diagnosis of ARM. Data were collected to identify malrotation, vertebral, anorectal, cardiac, tracheo-esophageal fistula, renal, radial, limb (VACTERL) anomalies, the type of ARM, operative procedures performed, and long-term bowel management. RESULTS: One hundred forty-six patients were identified. Upper gastrointestinal evaluation was performed in 21 patients (14.4%), while contrast enemas were performed in 22 patients (15.1%). Seven patients were found to have malrotation (4.8%) and 6/7 of these patients had 2 or more VACTERL anomalies. CONCLUSIONS: Patients with ARM and 2 or more VACTERL anomalies should undergo screening for malrotation. Patients with intestinal malrotation, ARM, and poor potential for bowel control should have their appendix preserved during a Ladd's procedure. [ABSTRACT FROM AUTHOR]

Background: Few evidence‐based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience‐coaching program, and 2) integrating ACP into that program, among AYAs with AC. Methods: Eligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management–Advanced Cancer (PRISM‐AC) program included PRISM's standard sessions targeting stress‐management, goal‐setting, cognitive‐restructuring, and meaning‐making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA‐specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4‐session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient‐reported anxiety, depression, and hope were examined descriptively. Results: Of 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty‐two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program. Conclusions: Resilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope. Lay Summary: Advance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce.We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience‐coaching program for AYAs.In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management–Advanced Cancer program to be feasible (≥70% intervention‐completion) and highly acceptable (positive post‐participation feedback, no evidence of participant‐distress).We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer. The Promoting Resilience in Stress Management–Advanced Cancer (PRISM‐AC) program integrates advance care planning into an established resilience‐coaching program for adolescents and young adults with advanced cancer. PRISM‐AC is found to be feasible and highly acceptable, and this suggests opportunities for clinical care and future research. [ABSTRACT FROM AUTHOR]

Conducting palliative care research can be personally and professionally challenging. Although limitations in funding and training opportunities are well described, a less recognized barrier to successful palliative care research is creating a sustainable and resilient team. In this special report, we describe the experience and lessons learned in a single palliative care research laboratory. In the first few years of the program, 75% of staff quit, citing burnout and the emotional tolls of their work. To address our sustainability, we translated resilience theory to practice. First, we identified and operationalized shared mission and values. Next, we conducted a resilience resource needs assessment for both individual team members and the larger team as a whole and created a workshop-based curriculum to address unmet personal and professional support needs. Finally, we changed our leadership approach to foster psychological safety and shared mission. Since then, no team member has left, and the program has thrived. As the demand for rigorous palliative care research grows, we hope this report will provide perspective and ideas to other established and emerging palliative care research programs. [ABSTRACT FROM AUTHOR]

Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer. Aim: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics. Design: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8–10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5. Setting/participants: Participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children's Hospital. Results: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less. Conclusion: The "Promoting Resilience in Stress Management" intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs. [ABSTRACT FROM AUTHOR]

Objectives: To evaluate the prevalence of special diet adoption in juvenile idiopathic arthritis (JIA) and parental perceptions of efficacy. Design: An online survey was distributed over a year to nearly 20,000 individuals. Results: Responses from 261 parents of patients with JIA were received. One of three (n = 79) had tried special diets, including gluten-free (66%), anti-inflammatory (41%), and lactose-free (25%). Overall, >50% of 79 parents reported that patients had improved pain or joint swelling. Conclusions: Special diets have been trialed by a third of the patients, with over half reporting symptom improvement. A prospective, controlled trial is warranted to test the efficacy of a dietary approach to JIA. [ABSTRACT FROM AUTHOR]

Background: Severe respiratory disease associated with enterovirus D68 (EV‐D68) has been reported in hospitalized pediatric patients. Virologic and clinical characteristics of EV‐D68 infections exclusively in patients presenting to a hospital Emergency Department (ED) or urgent care have not been well defined. Methods: Mid‐nasal swabs from pediatric patients with respiratory symptoms presenting to the ED or urgent care were evaluated using a commercial multiplex PCR platform. Specimens positive for rhinovirus/enterovirus (HRV/EV) were subsequently tested using real‐time reverse‐transcriptase PCR for EV‐D68. The PCR cycle threshold (CT) was used as a viral load proxy. Clinical outcomes were compared between patients with EV‐D68 and patients without EV‐D68 who tested positive for HRV/EV. Results: From August to December 2014, 511 swabs from patients with HRV/EV were available. EV‐D68 was detected in 170 (33%) HRV/EV‐positive samples. In multivariable models adjusted for age and underlying asthma, patients with EV‐D68 were more likely to require hospitalization for respiratory reasons (odds ratio (OR): 3.11, CI: 1.85‐5.25), require respiratory support (OR: 1.69, CI: 1.09‐2.62), have confirmed/probable lower respiratory tract infection (LRTI; OR: 3.78, CI: 2.03‐7.04), and require continuous albuterol or steroids (OR: 3.91, CI: 2.22‐6.88 and OR: 4.73, CI: 2.65‐8.46, respectively). Higher EV‐D68 viral load was associated with need for respiratory support and LRTI in multivariate models. Conclusions: Among pediatric patients presenting to the ED or urgent care, EV‐D68 causes more severe disease than non‐EV‐D68 HRV/EV independent of underlying asthma. High viral load was associated with worse clinical outcomes. Rapid and quantitative viral testing may help identify and risk stratify patients. [ABSTRACT FROM AUTHOR]

Abstract: PH is a risk factor for GL after HTx. However, traditional parameters are not reliable predictors of risk in children. We hypothesized that DPI (dPAP and DPG) are predictive of GL in pediatric HTx recipients. The UNOS/SRTR database was reviewed to identify pediatric HTx recipients (age <18 years) between 1994 and 2013. Recipients with pretransplant hemodynamic data were grouped by diagnosis (CMP or CHD), and the groups were analyzed separately. Bivariate Cox regression analysis examined the association between hemodynamic variables and GL. DPI showed the strongest association with early GL in recipients with CMP (dPAP: HR = 1.25 [1.09‐1.42]; DPG: 1.24 [1.11‐1.38]). Among CHD recipients, DPI were associated with early GL in those with preexisting PH (dPAP: HR = 1.16 [1.01‐1.33]; DPG: HR = 1.10 [1.00‐1.21]). No cutoff values for “high‐risk” DPI were identified, but a continuous relationship between higher DPI and risk of early GL was observed. DPI are associated with early GL in select pediatric HTx recipients. Our findings suggest that DPI should be considered as part of routine hemodynamic assessment for pediatric HTx candidates. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVE: Clinical decision rules have reduced use of computed tomography (CT) to evaluate minor pediatric head injury in pediatric emergency departments (EDs). CT use remains high in community EDs, where the majority of children seek medical care. We sought to reduce the rate of CT scans used to evaluate pediatric head injury from 29% to 20% in a community ED. METHODS: We evaluated a quality improvement (QI) project in a community ED aimed at decreasing the use of head CT scans in children by implementing a validated head trauma prediction rule for traumatic brain injury. A multidisciplinary team identified key drivers of CT use and implemented decision aids to improve the use of prediction rules. The team identified and mitigated barriers. An affiliated children's hospital offered Maintenance of Certification credit and QI coaching to participants. We used statistical process control charts to evaluate the effect of the intervention on monthly CT scan rates and performed a Wald test of equivalence to compare preintervention and postintervention CT scan proportions. RESULTS: The baseline period (February 2013-July 2014) included 695 patients with a CT scan rate of 29.2% (95% confidence interval, 25.8%-32.6%). The postintervention period (August 2014-0ctober 2015) included 651 patients with a CT scan rate of 17.4% (95% confidence interval, 14.5%-20.2%, P < .01). Barriers included targeting providers with variable pediatric experience and parental imaging expectations. CONCLUSIONS: We demonstrate that a Maintenance of Certification QI project sponsored by a children's hospital can facilitate evidence-based pediatric care and decrease the rate of unnecessary CT use in a community setting. [ABSTRACT FROM AUTHOR]

Background/Purpose. Understanding the practices of pediatric rheumatologists in diagnosing and treating chronic nonbacterial osteomyelitis (CNO) can provide important information to guide the development of consensus treatment plans. The objectives of this study were to determine physicians’ approaches to (1) diagnosing and monitoring CNO, (2) ordering a bone biopsy, and (3) making treatment decisions. Methods. A survey was distributed among members of the Childhood Arthritis and Rheumatology Research Alliance using a web-based questionnaire. Results. 121 of 277 (41%) attending physician members completed the survey. Plain radiographs (89%) were most commonly used followed by regional MRI (78%), bone scintigraphy (43%), and whole-body MRI (36%). The top three reasons for performing a biopsy were constitutional findings (66%), unifocal bone lesions (64%), and nocturnal bone pain (45%). Nearly all responders (95%) prescribed nonsteroidal anti-inflammatory drugs (NSAIDs) as initial therapy. For patients who failed NSAID treatment, methotrexate (67%), tumor necrosis factor inhibitors (65%), and bisphosphonates (46%) were the next most commonly used treatments. The presence of a spinal lesion increased the use of bisphosphonate treatment. Conclusion. The diagnostic approach and disease activity monitoring for CNO varied among surveyed physicians. Our survey findings provided important background for the development of consensus treatment plans for CNO. [ABSTRACT FROM AUTHOR]

Adolescents with type 1 diabetes (T1D) are at high risk for elevated diabetes distress, which greatly impacts diabetes management, glycemic outcomes and overall quality of life. Developing protective skills and "resilience resources" to navigate adversity and manage diabetes distress has high potential to help adolescents with T1D achieve optimal behavioral, psychological, and health outcomes. The "Promoting Resilience in Stress Management" (PRISM) program is a manualized, brief, skills-based intervention delivered over 6 months via two 45–60 min one-on-one sessions and a family meeting with a PRISM coach, and supplemented by booster calls and a digital app. This trial (PRISM versus usual care)is designed to:: (1) assess PRISM's impact on glycemic outcomes and diabetes distress among adolescents with T1D, and (2) explor PRISM's impact on resilience, self-reported adherence, and quality of life. We describe the protocol for a multi-site randomized controlled trial designed for adolescents ages 13–18 with elevated diabetes distress. The primary trial outcomes are glycemic outcomes and diabetes distress 6 months post-randomization. Secondary outcomes include resilience, self-reported adherence, and QOL 6 months post-randomization. Our hypothesis is that youth in the PRISM group will demonstrate better glycemic outcomes and improved diabetes distress, adherence, resilience, and QOL compared to usual care. This study will provide methodologically rigorous data and evidence regarding a novel intervention to promote resilience among adolescents with T1D and elevated diabetes distress. This research has the potential to offer a practical, skills-based curriculum designed to improve outcomes for this high-risk group. Trial Registration: Prospectively registered at Clinicaltrials.gov (NCT03847194). [ABSTRACT FROM AUTHOR]

Background Providing influenza vaccine to patients in the pediatric emergency department (PED) is one strategy to increase childhood influenza vaccine uptake. The Parent Attitudes about Childhood Vaccines (PACV) survey is a new tool to identify vaccine-hesitant parents that may facilitate influenza vaccine uptake in the PED. Objective To assess the feasibility of administering the PACV modified for influenza vaccination in the PED setting and to determine whether parental PACV scores are associated with patient receipt of influenza vaccine in the PED. Methods We conducted a cross-sectional study in the PED of a tertiary pediatric hospital in Seattle, WA during the 2013–2014 influenza season. English-speaking parents of children aged 6 months to 7 years who were afebrile, medically stable to be discharged home from the PED, and had not already received an influenza vaccine this season were administered a modified version of the PACV. PACV scores (0–100, higher score = higher hesitancy) were dichotomized (<50 and ≥50) consistent with previous validation studies. Feasibility was assessed by determining time to complete the PACV. Our primary outcome was influenza vaccine refusal in the PED. We used multivariable logistic regression to estimate unadjusted and adjusted odds ratios for association between vaccine refusal and dichotomized PACV scores. Results 152 parent participants were included in the analysis. The median time for administering the PACV was 7 min. The median PACV score was 28, with 74% scoring <50. Parents who scored ≥50 on the PACV had increased odds of refusing the influenza vaccine compared to parents who scored <50 (adjusted OR [95% CI]: 6.58 [2.03–21.38]). Conclusion Administration of the PACV in the PED is feasible, and higher PACV scores in this setting are associated with increased influenza vaccine refusal. [ABSTRACT FROM AUTHOR]