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.

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.

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.

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.

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.

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.

Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer.

Importance: The associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown. Objective: To model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference. Design, Setting, and Participants: This cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis. Exposures: Spiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality's importance. Main Outcomes and Measures: Variables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God's presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures. Results: A total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (ß = -7.94; 95% CI, -12.88 to -4.12), depressive symptoms (ß = -10.49; 95% CI, -15.92 to -6.50), and fatigue (ß = -8.90; 95% CI, -15.34 to -3.61). Feeling God's presence daily was indirectly associated with anxiety (ß = -3.37; 95% CI, -6.82 to -0.95), depressive symptoms (ß = -4.50; 95% CI, -8.51 to -1.40), and fatigue (ß = -3.73; 95% CI, -8.03 to -0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (ß = -2.81; 95% CI, -6.06 to -0.45), depressive symptoms (ß = -3.787; 95% CI, -7.68 to -0.61), and fatigue (ß = -3.11, 95% CI, -7.31 to -0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (ß = 2.11; 95% CI, 0.05 to 4.95) and depression (ß = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference. Conclusions and Relevance: In this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant's sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.

Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.

Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective: To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participants: This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure: Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures: The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Results: A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance: Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care.

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.

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.

Racial Minority Families' Preferences for Communication in Pediatric Intensive Care Often Overlooked.

OBJECTIVE: To compare the communication experiences and preferences of racial/ethnic minority and non-Hispanic white (NHW) families in the pediatric intensive care unit (PICU), including their interactions with bedside nurses. METHODS: Retrospective cohort study performed at a quaternary university-affiliated children's hospital with 70 pediatric intensive care beds. From October 2013 to December 2014, English-speaking family members of children admitted to the PICU were asked about their experiences communicating with PICU caregivers using a survey tool. RESULTS: 107 participants were included for analysis, of which 60 self-identified as a racial minority and 47 as NHW. Overall, 11% of families chose family meetings as their preferred setting for receiving information, as compared to family-centered rounds or unplanned bedside meetings. Only 50% of those with a family meeting felt they learned new information during the meeting. Chi-square statistics or Fisher's exact tests showed that minority families were less likely to report their bedside nurses spent enough time speaking with them (minority 67%, NHW 85%; p = 0.03) and less likely to receive communication from the medical team in their preferred setting (minority 63%, NHW 85%; p = 0.01). Logistic regression, controlling for covariates including education, insurance, and risk of mortality, showed that the relationship between minority status and concordance of preferred setting persisted (OR = 0.32, 95% C·I.: 0.11, 0.91). CONCLUSION: In general, families of PICU patients prefer meeting with the medical team during rounds or unplanned bedside meetings as opposed to formal family meetings. Despite this preference, minority families are less likely to receive communication from the medical team in their preferred settings. Meeting all families' communication setting needs may improve their communication experiences in the PICU.

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.

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity.

CONTEXT: No prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS. OBJECTIVE: To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record. METHODS: Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision-makers (N = 233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or healthy living control (conversations about developmental/relationship history and nutrition). RESULTS: Patients (n = 223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months after intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (P < 0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately seven times greater than controls (adjusted odds ratio = 6.58, 95% CI: 3.21-13.51, P < 0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (P < 0.0001). CONCLUSIONS: The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, DC, providing health equity in ACP, which can inform best practices.

Advance Care Planning and HIV Symptoms in Adolescence.

OBJECTIVES: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms. METHODS: In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms. Latent class analyses clustered individual patients based on symptom patterns. Path analysis examined the mediating role of dyadic treatment congruence with respect to the intervention effect on symptom patterns. RESULTS: Patients were a mean age of 17.8 years old, 54% male, and 93% African American. Latent class analysis identified 2 latent HIV-symptom classes at 12 months: higher symptoms and suffering (27%) and lower symptoms and suffering (73%). FACE pACP had a positive effect on dyadic treatment congruence (ß = .65; 95% CI: 0.04 to 1.28), and higher treatment congruence had a negative effect on symptoms and suffering (ß = -1.14; 95% CI: -2.55 to -0.24). Therefore, FACE pACP decreased the likelihood of symptoms and suffering through better dyadic treatment congruence (ß = -.69; 95% CI: -2.14 to -0.006). Higher religiousness (ß = 2.19; 95% CI: 0.22 to 4.70) predicted symptoms and suffering. CONCLUSIONS: FACE pACP increased and maintained agreement about goals of care longitudinally, which lowered adolescents' physical symptoms and suffering, suggesting that early pACP is worthwhile.

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.

Communication With Limited English-Proficient Families in the PICU.

OBJECTIVE: Health care disparities have been described for children of limited English-proficient (LEP) families compared with children of English-proficient (EP) families. Poor communication with the medical team may contribute to these worse health outcomes. Previous studies exploring communication in the PICU have excluded LEP families. We aimed to understand communication experiences and preferences in the 3 primary communication settings in the PICU. We also explored LEP families' views on interpreter use in the PICU. PATIENTS AND METHODS: EP and Spanish-speaking LEP families of children admitted to the PICU of a large tertiary pediatric hospital completed surveys between 24 hours and 7 days of admission. RESULTS: A total of 161 of 184 families were surveyed (88% response rate); 52 were LEP and 109 EP. LEP families were less likely to understand the material discussed on rounds (odds ratio [OR] 0.32, 95% confidence interval [CI] 0.11-0.90), to report that PICU nurses spent enough time speaking with them (OR 0.15, 95% CI 0.05-0.41), and to report they could rely on their nurses for medical updates (OR 0.07, 95% CI 0.02-0.25) controlling for covariates, such as education, insurance type, presence of a chronic condition, PICU length of stay, and mortality index. LEP families reported 53% of physicians and 41% of nurses used an interpreter "often." CONCLUSIONS: Physician and nurse communication with LEP families is suboptimal. Communication with LEP families may be improved with regular use of interpreters and an increased awareness of the added barrier of language proficiency.