The intersectionality of gender and poverty on symptom suffering among adolescents with cancer.

BACKGROUND: To determine if the intersectionality of gender and poverty is associated with health disparities among adolescents with cancer. We hypothesized unobserved latent classes of patients exist with respect to cancer-related symptoms; and class classification varies by gender-poverty combinations. PROCEDURE: Cross-sectional data were collected among adolescents with cancer and families (N = 126 dyads) at four tertiary pediatric hospitals. Adolescents were aged 14-21 years, English speaking, cancer diagnosis, not developmentally delayed, psychotic, homicidal, suicidal, or severely depressed. Latent class analysis and multinomial logit models were used for analysis. Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric symptom measures, Short forms, evaluated anxiety, depressive symptoms, pain interference, and fatigue. Family-reported household income used 2016 Federal Poverty Level (FPL) guidelines. RESULTS: Three distinct groups of patients were identified using PROMIS symptom patterns: High Distress-25%; High Physical/Low Psychological Distress-14%; and Low Distress-62%. Female adolescents living in households with incomes at or below the 2016 FPL had 30 times the odds of being classified in the High Distress class (higher probabilities of experiencing anxiety, depressive symptoms, pain interference, and fatigue) compared to those in the High Physical/Low Psychological Distress class (female and poverty: AOR = 30.27, 95% CI 1.23, 735.10), and this was statistically significant (ß = 3.41, 95% CI 0.21, 6.60; p = .04) but not compared to those in Low Distress. CONCLUSION: Adolescent females with cancer with households in poverty had significantly greater odds of experiencing high symptom distress, compared to those with high physical but low psychological distress. More comprehensive screening and intervention, as needed, may decrease disparities.

Shared spiritual beliefs between adolescents with cancer and their families.

BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. RESULTS: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.

The influence of religious beliefs and practices on health care decision-making among HIV positive adolescents.

It is unknown if religiousness/spirituality influences end-of-life treatment preferences among adolescents. Investigators assessed whether religiousness/spirituality moderates the relationship between an advance care planning intervention and end-of-life treatment preferences among 85 primarily African-American adolescents living with HIV/AIDS in outpatient-hospital-based HIV-specialty clinics in the United States. Adolescents aged 14-21 years living with HIV/AIDS and their families were randomized to three-weekly-60-minute sessions either: advance care planning (survey, goals of care conversation, advance directive); or control (developmental history, safety tips, nutrition/exercise). At 3-months post-intervention the intervention effect (decreasing the likelihood of choosing to continue treatments in all situations) was significantly moderated by religiousness/spirituality. Highly religious/spiritual adolescents were four times more likely to choose to continue treatments in all situations. Thus, intensive treatments at end-of-life may represent health equity, rather than health disparity. The belief believed that HIV is a punishment from God at baseline (15%, 14/94) was not associated with end-of-life treatment preferences. Twelve percent (11/94) reported they had stopped taking HIV medications for more than 3 days because of the belief in a miracle. Religiousness moderates adolescent's medical decision-making. Adolescents who believe in miracles should receive chaplaincy referrals to help maintain medication adherence.

The Effect of FAmily-CEntered (FACE®) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families.

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE®) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE® (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (ß = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (ß = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (ß = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.

Implications of Mothers' Social Networks for Risky Infant Sleep Practices.

OBJECTIVE: To describe the structure of networks in a cohort of mothers and to analyze associations of social network characteristics and norms with infant sleep practices. STUDY DESIGN: We recruited a prospective cohort of mothers with infants <6 months of age from January 2015 to December 2016. Mothers completed a survey about their personal social networks and infant care practices. Latent class analysis identified unobserved network types. Binary statistics and path analysis were performed. RESULTS: Overall, 402 mothers were surveyed. Latent class analysis identified 2 a priori unknown social network types: "exclusive" (restricted) and "expansive." Mothers who were black, younger, unmarried, less educated, and of lower socioeconomic status were more likely to have exclusive networks than expansive networks. Mothers with exclusive networks were more likely to be exposed to the norm of soft bedding (P = .002). Exposure to norms of non-supine infant placement, bedsharing, and soft bedding use within one's network was associated with engaging in these practices (P < .0001 for each). First-time mothers were more likely to pay attention to a non-supine norm and place infants in a non-supine position. Black mothers and first-time mothers were more likely to pay attention to the norm and use soft bedding. CONCLUSIONS: Both the type of networks mothers have and the norms regarding infant sleep practices that circulate within these networks differed by race. Network norms were strongly associated with infant sleep practices and may partially explain the racial disparity therein.

PROMIS pediatric measures validated in a longitudinal study design in pediatric oncology.

PURPOSE: This study assessed the responsiveness to change over time and theorized associations of Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric measures in children and adolescents in treatment for cancer to determine measure readiness for use in cancer clinical trials. METHODS: We administered eight PROMIS (three symptom, two psychological, and three performance) pediatric short-form measures and the Symptom Distress Scale (SDS) to 96 pediatric oncology patients at three time points during a course of chemotherapy. We assessed responsiveness using paired t tests and generalized estimating equation (GEE) models, calculated standardized response mean (SRM) values for PROMIS measures, and examined scores over three data points (T1-T3). Guided by the theory of unpleasant symptoms (TOUS), we examined associations among the PROMIS measures, the SDS, and other variables using GEE. RESULTS: The paired t tests showed statistically significant changes in two psychological measures and one performance measure from T1 to T2; three symptom, two psychological and two performance measures from T2 to T3; and three symptom and two psychological measures from T1 to T3. Findings from GEE models indicate PROMIS pediatric measures had statistically significant short-term and long-term changes, controlling for demographic and clinical variables. One performance measure did not achieve significant change at any time point. We found positive support for theorized relationships in the TOUS. CONCLUSIONS: Most of the PROMIS pediatric measures demonstrated changes over time and had significant relationships as theorized, thus supporting concurrent and construct validity of these measures when administered to pediatric oncology patients during a course of chemotherapy. This evidence supports the measures' readiness for use in clinical trials.

Quality of life of persons living with HIV and congruence with surrogate decision-makers.

PURPOSE: Physicians and caregivers rate patient quality of life (QOL) lower than patients rate their own QOL. This study investigated discrepancies between self-assessments of patient QOL by adults with HIV and their surrogate decision-makers. METHODS: We collected baseline data from 223 adult dyads in the FAmily-CEntered (FACE) Advance Care Planning (ACP) clinical trial, consisting of HIV positive patients and their chosen surrogates. Participants independently completed the Medical Outcome Study-HIV Survey (MOS-HIV) and the Palliative care Outcome Scale (POS). We used Wilcoxon Signed-Rank Test to assess differences in overall patient-surrogate means. We used Prevalence Adjusted Bias Adjusted Kappa (PABAK) statistics to assess dyadic agreement, with surrogate HIV status and cohabitation status as grouping variables. RESULTS: Patients were 56.1% male, 86.1% Black/African-American, aged 22-77 (mean = 50.83, SD = ± 12.33). Surrogates were 43.8% male, 84.1% Black/African-American, aged 18-82 (mean = 49.73, SD = ± 14.22). 46.2% of surrogates lived with the patient. 64.6% of surrogates reported negative HIV status. Surrogates were more likely to state patients were ill, p = 0.032. Among patient-surrogate dyads, most QOL assessments showed poor (0.00-0.39) or fair (0.40-0.59) agreement and agreement tended to be even poorer among patient-surrogate dyads where the surrogate had a shared HIV diagnosis. CONCLUSIONS: QOL discrepancies are said to arise from healthy surrogates overestimating the effects of chronic illness. In this novel assessment, many surrogates had a shared HIV diagnosis, without increased agreement. These findings highlight the challenge of accurately assessing patient QOL by surrogates, even when there is a shared HIV diagnosis. Improved communication is needed between patients and surrogates about the patients' representation of illness. National Clinical Trial Number: NCT01775436.

Executive Function and Psychosocial Quality of Life in School Age Children with Congenital Heart Disease.

OBJECTIVE: To test a model to predict psychosocial quality of life (QOL) in children with congenital heart disease (CHD) via executive dysfunction. STUDY DESIGN: Parents of 91 children with CHD requiring surgery in the first year of life completed questionnaires by mail or as part of their cardiology clinic visit. Latent class analysis identified 2 groups of patients with different likelihoods of executive dysfunction. Select medical and demographic characteristics and executive dysfunction group membership were evaluated as predictors of QOL using structural equation modeling. RESULTS: In children with CHD, aortic obstruction, male sex, and premature birth predicted worse executive function, explaining 59% of the variance. Structural equation modeling results indicated that executive dysfunction plays an important mediating role, through which CHD with aortic obstruction, male sex, and premature birth indirectly affect psychosocial QOL. Neurologic abnormalities and single-ventricle CHD did not significantly predict executive dysfunction or QOL. CONCLUSIONS: Executive dysfunction is a strong predictor of psychosocial QOL at school age. Select medical and demographic risk factors did not directly predict QOL at school age in CHD; however, aortic obstruction, premature birth, and male sex impacted QOL indirectly by contributing to executive dysfunction. These findings suggest important risk factors for executive dysfunction that can be monitored, allowing for provision of early supports for executive skills development in an effort to improve long term psychosocial QOL in at-risk children with CHD.

Parent Satisfaction With Communication Is Associated With Physician's Patient-Centered Communication Patterns During Family Conferences.

OBJECTIVES: To evaluate the association between physician's patient-centered communication patterns and parental satisfaction during decision-making family conferences in the PICU. DESIGN: Single-site, cross-sectional study. SETTING: Forty-four-bed PICUs in a free-standing children's hospital. PARTICIPANTS: Sixty-seven English-speaking parents of 39 children who participated in an audiorecorded family conference with 11 critical care attending physicians. MEASUREMENTS AND MAIN RESULTS: Thirty-nine family conferences were audiorecorded. Sixty-seven of 77 (92%) eligible parents were enrolled. The conference recordings were coded using the Roter Interaction Analysis System and a Roter Interaction Analysis System-based patient-centeredness score, which quantitatively evaluates the conversations for physician verbal dominance and discussion of psychosocial elements, such as a family's goals and preferences. Higher patient-centeredness scores reflect higher proportionate dialogue focused on psychosocial, lifestyle, and socioemotional topics relative to medically focused talk. Parents completed satisfaction surveys within 24 hours of the conference. Conferences averaged 45 minutes in length (SD, 19 min), during which the medical team contributed 73% of the dialogue compared with parental contribution of 27%. Physicians dominated the medical team, contributing 89% of the team contribution to the dialogue. The majority of physician speech was medically focused (79%). A patient-centeredness score more than 0.75 predicted parental satisfaction (ß = 12.05; p < 0.0001), controlling for the length of conference, child severity of illness, parent race, and socioeconomic status. Parent satisfaction was negatively influenced by severity of illness of the patient (ß = -4.34; p = 0.0003), controlling for previously mentioned factors in the model. CONCLUSIONS: Parent-physician interactions with more patient-centered elements, such as increased proportions of empathetic statements, question asking, and emotional talk, positively influence parent satisfaction despite the child's severity of illness.

PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes.

BACKGROUND: Establishing the ability of children and adolescents with cancer to complete the NIH-sponsored PROMIS pediatric measures electronically and the preliminary validity estimates of the measures (both full item banks and short forms) in pediatric oncology will contribute to our knowledge of the impact of cancer treatment on these young patients. PROCEDURES: A total of 203 8- to 17-year olds were administered eight PROMIS pediatric measures in a cross-sectional study design to establish known-group validity. Of the 200 who completed all or most of the items, a slight majority were male (55.5%) and white (54%). Patients were either undergoing treatment for cancer (n = 93) or in survivorship following treatment for cancer (n = 107). Measures were completed using computer interface during an in-person interaction with researchers. RESULTS: Only 3 of 203 participants did not complete the PROMIS pediatric measures. As hypothesized, participants in treatment were significantly different (worse) on parent-reported clinical indicators (blood counts, fatigue, and appetite) and on seven self-reported measures (depression, anxiety, peer relationships, pain interference, fatigue, upper extremity function, and mobility) from participants in survivorship. Females reported worse fatigue, anger, and pain interference than males. Worse patient-reported outcomes for patients in active treatment persisted after adjusting for potential confounding variables. CONCLUSIONS: Children and adolescents in treatment for cancer or in survivorship and ranging from 8 to 17 years of age can complete multiple PROMIS pediatric measures using a computer interface during an outpatient clinic visit or inpatient admission. Findings establish known-group validity for PROMIS pediatric measures in pediatric oncology.

The use of near-infrared spectroscopy during an extubation readiness trial as a predictor of extubation outcome.

OBJECTIVES: To determine whether the measurement of cerebral and somatic regional oxygen saturation during an extubation readiness trial predicts extubation failure in postoperative cardiac patients. DESIGN: Prospective observational study. SETTING: Tertiary care center cardiac ICU. PATIENTS: Pediatric patients 1 day to 21 years old following cardiac surgery for congenital heart disease. Patients were included if they were intubated for greater than 12 hours and were undergoing an extubation readiness trial. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Data collection included patient demographic, procedural, laboratory, and physiologic variables. Regional oxygen saturation values were recorded using near-infrared spectroscopy at baseline, during a 2-hour extubation readiness trial, and in the first 2 hours postextubation. Ninety-nine extubation readiness trials were conducted in 79 patients. Adjusting for baseline somatic regional oxygen saturation, logistic regression analysis demonstrated that patients with a decline in their minimum somatic regional oxygen saturation of at least 10% during an extubation readiness trial had a 6-time increased odds of extubation failure (p = 0.02; 95% CI, 1.26-29.8). Receiver-operating characteristic curve analysis demonstrated that a 12% decline in the minimum regional oxygen saturation best predicted extubation failure with 54% sensitivity and 82% specificity. CONCLUSIONS: A 12% decline in somatic regional oxygen saturation during an extubation readiness trial is associated with an increased risk of extubation failure following a successful extubation readiness trial. The addition of somatic regional oxygen saturation measurements to an extubation readiness trial may improve our ability to predict extubation outcome.

Dexmedetomidine for patients undergoing diagnostic cardiac procedures: a noninferiority study.

When anesthetizing children with congenital heart disease for diagnostic cardiac catheterization, anesthesiologists and cardiologists seek to use anesthetic regimens that yield minimal hemodynamic changes and allow for spontaneous ventilations. Recently, dexmedetomidine has been used as an anesthesia adjunct because of its sedative and analgesic properties and minimal ventilatory depressive effects. We tested the hypothesis that the combination of sevoflurane and dexmedetomidine is non-inferior to sevoflurane alone as it refers to hemodynamic measurements during diagnostic cardiac catheterization in children with a transplanted heart, one ventricle (Fontan procedure), or normal cardiac physiology. Patients were anesthetized with inhalation of sevoflurane in nitrous oxide/oxygen and, after baseline hemodynamic measurements, successive boluses of dexmedetomidine followed by continuous infusion were administered. In this study, non-inferiority was shown when differences at steady-state (dexmedetomidine + sevoflurane) compared to baseline (sevoflurane alone) and its associated 95% confidence interval fell completely within the range of plus or minus 20%. Forty-one (26 normal physiology, 9 cardiac transplantation, and 6 Fontan) patients were enrolled. Non-inferiority of sevoflurane + dexmedetomidine compared with sevoflurane alone was shown for heart rate, but not for arterial blood pressure in patients with normal and cardiac transplant physiology. In patients with normal cardiac physiology, non-inferiority was demonstrated for bispectral index. Therefore, while the lack of depressive respiratory effects and non-inferiority for heart rate are desirable, the lack of non-inferiority of dexmedetomidine + sevoflurane combination for arterial blood pressure do not justify the routine use of this combination compared with sevoflurane alone for children with congenital heart disease undergoing cardiac catheterization.

High-dose dexmedetomidine increases the opioid-free interval and decreases opioid requirement after tonsillectomy in children.

PURPOSE: Dexmedetomidine, a selective α(2) adrenoreceptor agonist, has analgesic and sedative properties, minimal impact on respiratory parameters, and reportedly decreases analgesic requirements after surgery. Given its pharmacodynamic profile, dexmedetomidine might have a role for postoperative pain control in children undergoing tonsillectomy. In this study, we hypothesized that dexmedetomidine would delay and decrease opioid requirements after tonsillectomy. METHODS: In a double-blind controlled trial, participants undergoing tonsillectomy were randomized to receive one intravenous dose of fentanyl (1 µg·kg(-1) or 2 µg·kg(-1)) or dexmedetomidine (2 µg·kg(-1) or 4 µg·kg(-1)) immediately after endotracheal intubation. Primary outcomes included requirement for rescue morphine in the initial postoperative period. RESULTS: One hundred and one children were enrolled. During the postoperative period, dexmedetomidine (2 and 4 µg·kg(-1) groups combined) significantly prolonged the opioid-free interval of children who underwent tonsillectomy compared with fentanyl (1 and 2 µg·kg(-1) groups combined) (P < 0.001). Children treated with dexmedetomidine 2 µg·kg(-1) vs dexmedetomidine 4 µg·kg(-1) had similar cumulative incidence curves for time to morphine rescue, whereas there was a small difference in time to first morphine rescue administration when comparing fentanyl 1 µg·kg(-1) vs fentanyl 2 µg·kg(-1). Furthermore, length of stay in the postanesthesia care unit was significantly longer for children treated with dexmedetomidine vs children treated with fentanyl (P = 0.0016). CONCLUSIONS: High-dose dexmedetomidine decreases opioid requirements, prolongs the opioid-free interval after tonsillectomy, and prolongs length of stay in the postanesthesia care unit. It is conceivable that these early opioid-sparing effects could benefit patients at risk for respiratory complications early in the postoperative course after tonsillectomy (e.g., patients with obstructive sleep apnea). (ClinicalTrials.gov number, NCT00654511).

The effect of dexmedetomidine during myringotomy and pressure-equalizing tube placement in children.

BACKGROUND: Bilateral myringotomy (BMT) is a commonly performed otolaryngologic procedure in children. OBJECTIVES: To examine the effects of intranasal dexmedetomidine, an α(2)-adrenoceptor agonist, on time-averaged pain scores, pain control, need for rescue analgesia, and agitation scores in children undergoing BMT. METHODS: We designed a trial to enroll 160 children randomized to one of four groups: two study groups, dexmedetomidine (1 or 2 µg·kg(-1)), or two control groups representing our institutional standards of practice (intranasal fentanyl-2 µg·kg(-1) or acetaminophen as needed postoperatively). RESULTS: After 101 children were enrolled, patient caregivers observed that some enrollees were excessively sedated and required prolonged postanesthesia care unit (PACU) stay. This observation led to an unplanned interim analysis and early trial termination. After data were collected, severe nonnormality of pain and agitation scores necessitated a switch of the outcome to assess repeated measurements of the proportion of patients with pain, severe pain, and agitation. Demographics, time to emergence, and agitation were similar among all groups. The risk of requiring acetaminophen rescue (P < 0.0001) and proportion of patients having pain (P = 0.016) was significantly higher in one control group (rescue analgesia only) compared with fentanyl or dexmedetomidine groups. Importantly, length of stay in the PACU was significantly longer in dexmedetomidine-2 µg·kg(-1)-treated compared with dexmedetomidine-1 µg·kg(-1)-treated, fentanyl-treated, or the control group, P = 0.0037. CONCLUSIONS: In this trial, we were unable to answer the original question as to the role of dexmedetomidine on time-averaged pain and agitation scores after BMT. However, our findings clearly demonstrate that in children undergoing BMT, at higher doses, dexmedetomidine significantly prolongs length of stay in the PACU.

Vaccination coverage among young homeless children compared to US national immunization survey data.

INTRODUCTION: Comprehensive vaccination coverage among homeless children in the United States (US) is largely unknown although a few studies suggest low coverage with single vaccinations. This study compared vaccination coverage with a combined 7-vaccines series among homeless children in the District of Columbia (DC) to coverage among other US children. MATERIALS AND METHODS: A cross-sectional survey of homeless children in DC was conducted from 2018 to 2019. Recruitment occurred at housing shelters, social services centers, and a diaper dispensary, and through limited chain referral. English-speaking parents of a child aged 19 to 35 months who spent the majority of the last 30 nights homeless were recruited. Participants consented for their child's healthcare providers to submit vaccination records. The vaccination coverage estimate of this sample was compared with estimates of three populations in the 2018 National Immunization Survey (NIS): children in DC (NIS DC), children in the US (NIS US), and children in the US below the federal poverty level (NIS poor). RESULTS: Most of the 135 children had experienced at least two lifetime episodes (63.7%) and 12 months (57%) of homelessness. The estimated percent up to date was 52.6% (95% CI: 43.8%, 61.3%). This estimate was 20.4 (95% CI: 11.9, 28.8, p < .0001), 20 (95% CI: 11.5, 28.4, p < .0001), and 11.5 (95% CI: 3.1, 20, p < .01) percentage points lower than estimates for the NIS DC, NIS US and NIS poor populations, respectively. After adjusting for child's age and race/ethnicity, vaccination coverage of the NIS DC sample was below that of NIS US (p < .01) and NIS poor samples (p < .05). CONCLUSION: Children experiencing homelessness may be at risk of under-vaccination, even when compared to a general population of children in poverty. Awareness of this heightened risk may allow for more precise targeting of vaccination delivery support specifically to children experiencing homelessness.

Associations between Adverse Childhood Experiences and Need and Unmet Need for Care Coordination.

Introduction: Children exposed to adverse childhood experiences (ACEs) may access multiple systems of care to address medical and social complexities. Care coordination (CC) optimizes health outcomes for children with special health care needs who often use multiple systems of care. Little is known about whether ACEs are associated with need and unmet need for CC. Methods: Use of the 2016-2017 National Survey of Children's Health to identify children who saw ≥1 health care provider in the last 12 months. The study team used weighted logistic regression analyses to examine associations between 9 ACE types, ACE score and need and unmet need for CC. Results: In the sample (N=39,219, representing 38,316,004 US children), material hardship (aOR, 1.50; 95% CI, 1.29-1.75), parental mental illness (aOR, 1.31; 95% CI, 1.07-1.60), and neighborhood violence (aOR, 1.33; 95% CI, 1.01-1.74) were significantly associated with an increased need for CC. Material hardship was also associated with unmet need for CC (aOR, 2.37; 95% CI, 1.80 - 3.11). Children with ACE scores of 1, 2, 3, and ≥4 had higher odds of need and unmet need for CC than children with 0 ACEs. Discussion: Specific ACE types and higher ACE scores were associated with need and unmet need for CC. Evaluating the unique needs of children who endured ACEs should be considered in the design and implementation of CC processes in the pediatric healthcare system.

Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT.

BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (ß = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (ß = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (ß = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

Impact of Personal Social Network Types on Breastfeeding Practices in United States-Born Black and White Women.

Background: An individual's personal social network influences behavior; one is more likely to adopt behaviors consistent with norms within the network to avoid social stigma. Personal social network types, which are associated with individual behaviors, have been identified for new mothers: exclusive (kin centric) and expansive (not kin centric). Objective: To analyze the impact of personal social network type on breastfeeding practices in U.S.-born Black and White mothers. Methods: Mothers of infants <6 months old completed surveys about their personal social networks and feeding practices. Multinomial logit models examined how social network types moderated effects of sociodemographic factors on feeding practices. Results: Of 402 mothers, 67% self-identified as Black and 33% as White. Forty-six percent were exclusively breastfeeding; 26% were mixed breast and formula feeding. The likelihood of exclusively breastfeeding was positively associated with percentage of network members who had breastfed; this association was stronger for mothers with exclusive networks than those with expansive networks (ß = 2.74, p < 0.001 versus ß = 1.78, p = 0.03). Black race was positively correlated with exclusive breastfeeding or mixed feeding for mothers with exclusive networks (ß = 1.50, p = 0.046; ß = 1.86, p = 0.02, respectively). Lower educational level was negatively correlated with exclusive breastfeeding; this correlation was stronger for mothers with exclusive networks (ß = -1.91, p = 0.002 versus ß = -1.70, p = 0.04). Lower educational level was also negatively correlated with mixed feeding for mothers with exclusive networks (ß = -1.61, p = 0.02). Conclusions: Mothers' personal social network type likely moderates the relationship between sociodemographic variables and feeding practices. While the influence of having network members with breastfeeding experience is important, the magnitude of influence is stronger in exclusive networks.

Advance Care Planning-Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT.

CONTEXT: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied. OBJECTIVE: To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls. METHODS: Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis. FINDINGS: 223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (ß = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class. CONCLUSION: ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.

The Role of Religiousness and Spirituality in Health-related Quality of Life of Persons Living with HIV: A Latent Class Analysis.

PURPOSE: Understanding how religion and spirituality influence health-related quality of life (HRQoL) is important for developing holistic, patient-centered treatment. This study determined distinct latent classes of religiousness/spirituality for adult persons living with HIV (PLWH) and associations between latent class membership and HRQoL. METHODS: Baseline data was collected from 223 patients in the FAmily CEntered (FACE) Advance Care Planning (ACP) clinical trial for PLWH. Patients completed the Brief Multidimensional Measurement of Religiousness/Spirituality (BMMRS-adapted), Patient Health Questionnaire (PHQ-9), Medical Outcome Study-HIV Survey (MOS-HIV) and the Palliative care Outcome Scale (POS). The optimal number of latent classes was determined by comparing K-Class model with (K-1)-Class model iteratively. The relationship between latent class membership, HRQoL and demographic characteristics was assessed. RESULTS: Patients were 56.1% male, 86.1% Black/African American, aged 22-77 (Mean=50.83). 75.3% were Christian. LCA identified three classes: traditionally religious (35%), privately religious (47.1%), and spiritual but not religious (17.9%). MOS-HIV mental health (p < 0.001), MOS-HIV quality of life (p = 0.014) and MOS-HIV health transition (p = 0.016) scores were significantly higher among patients who were traditionally religious. These patients were more likely to be 40+ years and Black. Patients in the privately religious group had the lowest levels of mental health and HRQoL. CONCLUSIONS: Understanding how religiousness and spirituality influence HRQoL can help the medical community develop holistic, patient-centered and culturally-sensitive interventions that could improve outcomes for PLWH and potentially mitigate the impact of health disparities within the Black and LGBTQ communities.