Pediatric advocacy: Advancement in academic institutions.

IMPACT: Children are facing many threats to their health today that require system change at a sweeping level to have real-world impact. Pediatricians are positioned as natural leaders to advocate for these critical community and policy changes. Academic medical center (AMC) leaders recognize the importance of this advocacy and clear steps can be taken to improve the structure to support pediatricians in their advocacy careers through faculty development and promotion, including standardized scholarly measurement of the outcomes.

Policy in pediatric nephrology: successes, failures, and the impact on disparities.

Pediatric nephrology has a history rooted in pediatric advocacy and has made numerous contributions to child health policy affecting pediatric kidney diseases. Despite this progress, profound social disparities remain for marginalized and socially vulnerable children with kidney disease. Different risk factors, such as genetic predisposition, environmental factors, social risk factors, or health care access influence the emergence and progression of pediatric kidney disease, as well as access to life-saving interventions, leading to disparate outcomes. This review will summarize the breadth of literature on social determinants of health in children with kidney disease worldwide and highlight policy-based initiatives that mitigate the adverse social factors to generate greater equity in pediatric kidney disease.

Bereaved parents' views on end-of-life care for children with cancer: Quality marker implications.

BACKGROUND: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology. METHODS: This study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer ≥6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care). RESULTS: The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment. CONCLUSIONS: This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.

Meeting the Needs of Postpartum Women With and Without a Recent Preterm Birth: Perceptions of Maternal Family Planning in Pediatrics.

OBJECTIVES: Women face distinct barriers to meeting their reproductive health needs postpartum, especially women who deliver preterm. Pediatric encounters present unique opportunities to address women's family planning, particularly within 18 months of a prior pregnancy, when pregnancy has an elevated risk of an adverse outcome, such as preterm birth. To ensure maternal family planning initiatives are designed in a patient-centered manner, we explored perspectives on addressing reproductive health in a pediatric setting among women with and without a recent preterm delivery. METHODS: We conducted semi-structured, qualitative interviews with 41 women (66% delivered preterm). Women who delivered at any gestational age were interviewed at a pediatric primary care clinic. We also interviewed women whose infants were either in a level II intensive care nursery or attending a high-risk infant follow-up clinic, all of whom had delivered preterm. Data were analyzed using team-based coding and theme analysis. RESULTS: While women's preferred timing and setting for addressing peripartum contraception varied, they largely considered pediatric settings to be an acceptable place to discuss family planning. A few women felt family planning fell outside of the pediatric scope or distracted from the child focus. Women discussed various barriers to accessing family planning care postpartum, including circumstances unique to women who delivered preterm. CONCLUSIONS FOR PRACTICE: Family planning interventions in pediatric settings were overall an acceptable approach to reducing barriers to care among our sample of women who predominantly delivered preterm. These exploratory findings justify further investigation to assess their generalizability and to develop maternal family planning interventions for pediatric settings.

Inpatient utilization and disparities: The last year of life of adolescent and young adult oncology patients in California.

BACKGROUND: Studies of adolescent and young adult (AYA) oncology end-of-life care utilization are critical because cancer is the leading cause of nonaccidental AYA death and end-of-life care contributes significantly to health care expenditures. This study was designed to determine the quantity of and disparities in inpatient utilization in the last year of life of AYAs with cancer. METHODS: The California Office of Statewide Health Planning and Development administrative discharge database, linked to death certificates, was used to perform a population-based analysis of cancer patients aged 15 to 39 years who died in 2000-2011. The number of hospital days and the inpatient costs were determined for each patient in the last year of his or her life, as were clinical and sociodemographic factors associated with high inpatient utilization. Admission patterns as death approached were also evaluated. RESULTS: The 12,883 patients were admitted for 40 days on average in the last year of life, and this cost $151,072 per patient in inpatient costs. As death approached, the admission rates and the percentage of all admissions occurring at nonspecialty centers increased. Five percent of patients used 20% of bed days in the last year (high utilizers). Factors associated with high utilization included younger age (15-30 years), Hispanic ethnicity, non-health maintenance organization insurance, and hematologic malignancies. CONCLUSIONS: AYA oncology decedents were admitted for 40 days in their last year of life. Subgroups with high utilization had distinct sociodemographic and clinical characteristics, and nonspecialty center admissions increased as death approached. This demonstrates the need for palliative care at nonspecialty centers. Future studies need to determine whether these patterns are goal-concurrent, include high utilizers, and monitor the effects of health care reform. Cancer 2018;124:1819-27. © 2018 American Cancer Society.

The Patient Protection and Affordable Care Act dependent coverage expansion: Disparities in impact among young adult oncology patients.

BACKGROUND: Private health insurance is associated with improved outcomes in patients with cancer. However, to the authors' knowledge, little is known regarding the impact of the Patient Protection and Affordable Care Act Dependent Coverage Expansion (ACA-DCE), which extended private insurance to young adults (to age 26 years) beginning in 2010, on the insurance status of young adults with cancer. METHODS: The current study was a retrospective, population-based analysis of hospitalized young adult oncology patients (aged 22-30 years) in California during 2006 through 2014 (11,062 patients). Multivariable regression analyses examined factors associated with having private insurance. Results were presented as adjusted odds ratios and 95% confidence intervals. A difference-in-difference analysis examined the influence of the ACA-DCE on insurance coverage by race/ethnicity and federal poverty level. RESULTS: Multivariable regression demonstrated that patients of black and Hispanic race/ethnicity were less likely to have private insurance before and after the ACA-DCE, compared with white patients. Younger age (22-25 years) was associated with having private insurance after implementation of the ACA-DCE (odds ratio, 1.20; 95% confidence interval, 1.06-1.35). In the difference-in-difference analysis, private insurance increased among white patients aged 22 to 25 years who were living in medium-income (2006-2009: 64.6% vs 2011-2014: 69.1%; P = .003) and high-income (80.4% vs 82%; P = .043) zip codes and among Asians aged 22 to 25 years living in high-income zip codes (73.2 vs 85.7%; P = .022). Private insurance decreased for all Hispanic patients aged 22 to 25 years between the 2 time periods. CONCLUSIONS: The ACA-DCE provision increased insurance coverage, but not among all patients. Private insurance increased for white and Asian patients in higher income neighborhoods, potentially widening social disparities in private insurance coverage among young adults with cancer. Cancer 2018;124:110-7. © 2017 American Cancer Society.

Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California.

BACKGROUND: Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a majority of these patients prefer a home death, to the authors' knowledge, little is known regarding their barriers to accessing their preferred location of death. As a first step, the authors sought to determine, across a large population, 20-year trends in the location of death among AYA patients with cancer. METHODS: Using the Vital Statistics Death Certificate Database of the California Office of Statewide Health Planning and Development, the authors performed a retrospective, population-based analysis of California patients with cancer aged 15 to 39 years who died between 1989 and 2011. Sociodemographic and clinical factors associated with hospital death were examined using multivariable logistic regression. RESULTS: Of 30,573 AYA oncology decedents, 57% died in a hospital, 33% died at home, and 10% died in other locations (eg, hospice facility or nursing facility). Between 1989 and 1994, hospital death rates decreased from 68.3% to 53.6% and at-home death rates increased from 16.8% to 35.5%. Between 1995 and 2011, these rates were stable. Those individuals who were more likely to die in a hospital were those aged <30 years, of minority race, of Hispanic ethnicity, who lived ≤10 miles from a specialty center, and who had a diagnosis of leukemia or lymphoma. CONCLUSIONS: Overall, the majority of AYA cancer deaths occurred in a hospital, with a 5-year shift to more in-home deaths that abated after 1995. In-hospital deaths were more common among younger patients, patients of minority race/ethnicities, and those with a leukemia or lymphoma diagnosis. Further study is needed to determine whether these rates and disparities are consistent with patient preferences. Cancer 2017;123:4178-4184. © 2017 American Cancer Society.

Adolescent and young adult oncology patients: Disparities in access to specialized cancer centers.

BACKGROUND: Adolescents and young adults (AYAs) ages 15 to 39 years with cancer continue to experience disparate survival outcomes compared with their younger and older counterparts. This may be caused in part by differential access to specialized cancer centers (SCCs), because treatment at SCCs has been associated with improved overall survival. The authors examined social and clinical factors associated with AYA use of SCCs (defined as Children's Oncology Group-designated or National Cancer Institute-designated centers). METHODS: A retrospective, population-based analysis was performed on all hospital admissions of AYA oncology patients in California during 1991 through 2014 (n = 127,250) using the Office of Statewide Health Planning and Development database. Multivariable logistic regression analyses examined the contribution of social and clinical factors on always receiving care from an SCC (vs sometimes or never). Results are presented as adjusted odds ratios (ORs) and 95% confidence intervals (CIs). RESULTS: Over the past 20 years, the percentage of patients always receiving inpatient care at an SCC increased over time (from 27% in 1991 to 43% in 2014). In multivariable regression analyses, AYA patients were less likely to always receive care from an SCC if they had public insurance (OR, 0.64; 95% CI, 0.62-0.66), were uninsured (OR, 0.51; 95% CI, 0.46-0.56), were Hispanic (OR, 0.88; 95% CI, 0.85-0.91), lived > 5 miles from an SCC, or had a diagnosis other than leukemia and central nervous system tumors. CONCLUSIONS: Receiving care at an SCC was influenced by insurance, race/ethnicity, geography, and tumor type. Identifying the barriers associated with decreased SCC use is an important first step toward improving outcomes in AYA oncology patients. Cancer 2017;123:2516-23. © 2017 American Cancer Society.

Pediatric Oncology Discharges With Febrile Neutropenia: Variation in Location of Care.

We examined the use of Pediatric Cancer Specialty Centers (PCSCs) over time and the length of stay (LOS) in pediatric oncology patients with a diagnosis of febrile neutropenia. PCSCs were defined as Children's Oncology Group and California Children's Services designated centers. We performed a retrospective analysis on all discharges of pediatric (0 to 18) oncology patients with febrile neutropenia in California (1983 to 2011) using the private Office of Statewide Health Planning and Development database. We examined influence of age, sex, race/ethnicity, payer, income, distance, tumor type, and complications on utilization of PCSCs and LOS (SAS 9.2). Analysis of 24,559 pediatric oncology febrile neutropenia discharges showed hospitalizations in PCSCs increasing from 48% in 1983 to 94% in 2011. The adjusted regression analysis showed decreased PCSC utilization for ages 15 to 18, Hispanic patients, and those living >40 miles away. The median PCSC LOS was 9 days compared with 7 days at a non-PCSC (P<0.0001). Discharge from a PCSC was associated with a LOS >8 days after controlling for complications. Inpatient PCSC care for febrile neutropenia in California has increased since 1983. Receiving care at a PCSC is influenced by age, tumor type, ethnicity, geography, and complications.

Lunch at the library: examination of a community-based approach to addressing summer food insecurity.

OBJECTIVE: To examine a library-based approach to addressing food insecurity through a child and adult summer meal programme. The study examines: (i) risk of household food insecurity among participants; (ii) perspectives on the library meal programme; and (iii) barriers to utilizing other community food resources. DESIGN: Quantitative surveys with adult participants and qualitative semi-structured interviews with a sub-sample of adult participants. SETTING: Ten libraries using public and private funding to serve meals to children and adults for six to eight weeks in low-income Silicon Valley communities (California, USA) during summer 2015. SUBJECTS: Adult survey participants (≥18 years) were recruited to obtain maximum capture, while a sub-sample of interview participants was recruited through maximum variation purposeful sampling. RESULTS: Survey participants (n 161) were largely Latino (71 %) and Asian (23 %). Forty-one per cent of participants screened positive for risk of food insecurity in the past 12 months. A sub-sample of programme participants engaged in qualitative interviews (n 67). Interviewees reported appreciating the library's child enrichment programmes, resources, and open and welcoming atmosphere. Provision of adult meals was described as building community among library patrons, neighbours and staff. Participants emphasized lack of awareness, misinformation about programmes, structural barriers (i.e. transportation), immigration fears and stigma as barriers to utilizing community food resources. CONCLUSIONS: Food insecurity remains high in our study population. Public libraries are ideal locations for community-based meal programmes due to their welcoming and stigma-free environment. Libraries are well positioned to link individuals to other social services given their reputation as trusted community organizations.

Attitudes Toward Smoking Cessation Among Sheltered Homeless Parents.

The prevalence of smoking among homeless adults is approximately 70 %. Cessation programs designed for family shelters should be a high priority given the dangers cigarette smoke poses to children. However, the unique nature of smoking in the family shelter setting remains unstudied. We aimed to assess attitudes toward smoking cessation, and unique barriers and motivators among homeless parents living in family shelters in Northern California. Six focus groups and one interview were conducted (N = 33, ages 23-54). The focus groups and interviews were audiorecorded, transcribed verbatim, and a representative team performed qualitative theme analysis. Eight males and 25 females participated. The following major themes emerged: (1) Most participants intended to quit eventually, citing concern for their children as their primary motivation. (2) Significant barriers to quitting included the ubiquity of cigarette smoking, its central role in social interactions in the family shelter setting, and its importance as a coping mechanism. (3) Participants expressed interest in quitting "cold turkey" and in e-cigarettes, but were skeptical of the patch and pharmacotherapy. (4) Feelings were mixed regarding whether individual, group or family counseling would be most effective. Homeless parents may be uniquely motivated to quit because of their children, but still face significant shelter-based social and environmental barriers to quitting. Successful cessation programs in family shelters must be designed with the unique motivations and barriers of this population in mind.

Lesbian, Gay, Bisexual, and Transgender Patient Care: Medical Students' Preparedness and Comfort.

UNLABELLED: Phenomenon: Lesbian, gay, bisexual, and transgender (LGBT) individuals face significant barriers in accessing appropriate and comprehensive medical care. Medical students' level of preparedness and comfort caring for LGBT patients is unknown. APPROACH: An online questionnaire (2009-2010) was distributed to students (n = 9,522) at 176 allopathic and osteopathic medical schools in Canada and the United States, followed by focus groups (2010) with students (n = 35) at five medical schools. The objective of this study was to characterize LGBT-related medical curricula, to determine medical students' assessments of their institutions' LGBT-related curricular content, and to evaluate their comfort and preparedness in caring for LGBT patients. FINDINGS: Of 9,522 survey respondents, 4,262 from 170 schools were included in the final analysis. Most medical students (2,866/4,262; 67.3%) evaluated their LGBT-related curriculum as "fair" or worse. Students most often felt prepared addressing human immunodeficiency virus (HIV; 3,254/4,147; 78.5%) and non-HIV sexually transmitted infections (2,851/4,136; 68.9%). They felt least prepared discussing sex reassignment surgery (1,061/4,070; 26.1%) and gender transitioning (1,141/4,068; 28.0%). Medical education helped 62.6% (2,669/4,262) of students feel "more prepared" and 46.3% (1,972/4,262) of students feel "more comfortable" to care for LGBT patients. Four focus group sessions with 29 students were transcribed and analyzed. Qualitative analysis suggested students have significant concerns in addressing certain aspects of LGBT health, specifically with transgender patients. Insights: Medical students thought LGBT-specific curricula could be improved, consistent with the findings from a survey of deans of medical education. They felt comfortable, but not fully prepared, to care for LGBT patients. Increasing curricular coverage of LGBT-related topics is indicated with emphasis on exposing students to LGBT patients in clinical settings.

Asthma, tobacco smoke and the indoor environment: a qualitative study of sheltered homeless families.

OBJECTIVE: Asthma is common in homeless children with an incidence of 28-40%. There are few published studies investigating asthma in homeless children. This study examines the perspectives of both caregivers and shelter staff regarding challenges and opportunities of caring for children with asthma. METHODS: A focus group of sheltered parents (n = 10) with children who have asthma was conducted to identify barriers to optimal asthma management. Key informant interviews (n = 6) were conducted with shelter staff to discuss the shelter systems and policies to address childhood asthma. Data were audio-recorded and transcribed. A representative analysis team performed qualitative theme analysis. RESULTS: Key themes across 5 domains were identified: asthma education, access to asthma medication and equipment, asthma action plans, structural barriers to asthma management and environmental triggers. Parents identified multiple asthma triggers present in the shelter environment but cited lack of control as a barrier to remediation. Shelter staff desired elimination of asthma triggers but refer to the lack of resources as the primary barrier. Shelter staff favored a smoking ban on shelter property but named challenges to policy implementation. Both parents and staff identified asthma education and increased access to medications would be helpful. CONCLUSIONS: Policies to reduce environmental exposures, such as a smoking ban, to asthma triggers has the potential to improve the health of sheltered children with asthma.

Increased utilization of pediatric specialty care: a population study of pediatric oncology inpatients in California.

OBJECTIVE: To examine inpatient utilization of pediatric cancer specialty centers (PCSCs) by pediatric oncology patients. STUDY DESIGN: We performed a retrospective (1999 to 2010) population-based analysis of oncology hospitalizations for pediatric patients aged 0 through 18 years using the California Office of Statewide Health Planning and Development database. Logistic regression examined hospitalization at 29 PCSCs and variables of age, sex, tumor type, payer, race, income, and distance to admission site. RESULTS: Analysis of 103,961 pediatric oncology discharges revealed that 93% occurred at PCSCs. These sites experienced a 20% increase in pediatric oncology discharges, conversely non-PCSCs exhibited a 70% decrease (P<0.0001). Multivariate analyses revealed increased utilization with young age (odds ratio [OR], 4.58; 95% CI, 3.88-5.42), African American (OR, 1.26; 95% CI, 1.11-1.43), and middle income (OR, 1.36; 95% CI, 1.29-1.45). Decreased utilization was seen for females (OR, 0.88; 95% CI, 0.84-0.93) and Hispanics (OR, 0.72; 95% CI, 0.68-0.77). Payer and proximity were not significantly associated with change in utilization. Tumor types less likely to utilize a PCSC included germ cell, solid, and central nervous system tumors. Adolescents were >3 times less likely to be treated at a PCSC. CONCLUSIONS: Inpatient pediatric oncology care in California has become increasingly regionalized with the vast majority of patients accessing PCSCs. However, variability in hospitalizations of adolescent patients and children not treated in PCSCs deserve further evaluation.

Educating health care professionals on human trafficking.

BACKGROUND: The US Department of State estimates that there are between 4 and 27 million individuals worldwide in some form of modern slavery. Recent studies have demonstrated that 28% to 50% of trafficking victims in the United States encountered health care professionals while in captivity, but were not identified and recognized. This study aimed to determine whether an educational presentation increased emergency department (ED) providers' recognition of human trafficking (HT) victims and knowledge of resources to manage cases of HT. METHODS: The 20 largest San Francisco Bay Area EDs were randomized into intervention (10 EDs) or delayed intervention comparison groups (10 EDs) to receive a standardized educational presentation containing the following: background about HT, relevance of HT to health care, clinical signs in potential victims, and referral options for potential victims. Participants in the delayed intervention group completed a pretest in the period the immediate intervention group received the educational presentation, and all participants were assessed immediately before (pretest) and after (posttest) the intervention. The intervention effect was tested by comparing the pre-post change in the intervention group to the change in 2 pretests in the delayed intervention group adjusted for the effect of clustering within EDs. The 4 primary outcomes were importance of knowledge of HT to the participant's profession (5-point Likert scale), self-rated knowledge of HT (5-point Likert scale), knowledge of who to call for potential HT victims (yes/no), and suspecting that a patient was a victim of HT (yes/no). FINDINGS: There were 258 study participants from 14 EDs; 141 from 8 EDs in the intervention group and 117 from 7 EDs in the delayed intervention comparison group, of which 20 served as the delayed intervention comparison group. Participants in the intervention group reported greater increases in their level of knowledge about HT versus those in the delayed intervention comparison group (1.42 vs -0.15; adjusted difference = 1.57 [95% confidence interval, 1.02-2.12]; P < 0.001). Pretest ratings of the importance of knowledge about HT to the participant's profession were high in both groups and there was no intervention effect (0.31 vs 0.55; -0.24 [-0.90-0.42], P = 0.49). Knowing who to call for potential HT victims increased from 7.2% to 59% in the intervention group and was unchanged (15%) in the delayed intervention comparison group (61.4% [28.5%-94.4%]; P < 0.01). The proportion of participants who suspected their patient was a victim of HT increased from 17% to 38% in the intervention group and remained unchanged (10%) in the delayed intervention comparison group (20.9 [8.6%-33.1%]; P < 0.01). INTERPRETATION: A brief educational intervention increased ED provider knowledge and self-reported recognition of HT victims.