Langerhans cell histiocytosis: NACHO update on progress, chaos, and opportunity on the path to rational cures.

Langerhans cell histiocytosis (LCH) is a myeloid neoplastic disorder characterized by lesions with CD1a-positive/Langerin (CD207)-positive histiocytes and inflammatory infiltrate that can cause local tissue damage and systemic inflammation. Clinical presentations range from single lesions with minimal impact to life-threatening disseminated disease. Therapy for systemic LCH has been established through serial trials empirically testing different chemotherapy agents and durations of therapy. However, fewer than 50% of patients who have disseminated disease are cured with the current standard-of-care vinblastine/prednisone/(mercaptopurine), and treatment failure is associated with long-term morbidity, including the risk of LCH-associated neurodegeneration. Historically, the nature of LCH-whether a reactive condition versus a neoplastic/malignant condition-was uncertain. Over the past 15 years, seminal discoveries have broadly defined LCH pathogenesis; specifically, activating mitogen-activated protein kinase pathway mutations (most frequently, BRAFV600E) in myeloid precursors drive lesion formation. LCH therefore is a clonal neoplastic disorder, although secondary inflammatory features contribute to the disease. These paradigm-changing insights offer a promise of rational cures for patients based on individual mutations, clonal reservoirs, and extent of disease. However, the pace of clinical trial development behind lags the kinetics of translational discovery. In this review, the authors discuss the current understanding of LCH biology, clinical characteristics, therapeutic strategies, and opportunities to improve outcomes for every patient through coordinated agent prioritization and clinical trial efforts.

Vaccination practices of pediatric oncologists from eight states.

BACKGROUND: Vaccinations are a vital part of routine childhood and adolescent preventive care. We sought to identify current oncology provider practices, barriers, and attitudes towards vaccinating childhood and adolescent cancer patients and survivors. METHODS: We conducted a one-time online survey distributed from March-October 2018 to pediatric oncologists at nine institutions across the United States (N = 111, 68.8% participation rate). The survey included 32 items about vaccination practices, barriers to post-treatment vaccination, availability of vaccinations in oncology clinic, familiarity with vaccine guidelines, and attitudes toward vaccination responsibilities. Descriptive statistics were calculated in STATA 14.2. RESULTS: Participants were 54.0% female and 82.9% white, with 12.6% specializing in Bone Marrow Transplants. Influenza was the most commonly resumed vaccine after treatment (7030%). About 50%-60% were familiar with vaccine guidelines for immunocompromised patients. More than half (62.7%) recommended that patients restart most immunizations 6 months to 1 year after chemotherapy. Common barriers to providers recommending vaccinations included not having previous vaccine records for patients (56.8%) or lacking time to ascertain which vaccines are needed (32.4%). Of participants, 66.7% stated that vaccination should be managed by primary care providers, but with guidance from oncologists. CONCLUSIONS: Many pediatric oncologists report being unfamiliar with vaccine guidelines for immunocompromised patients and almost all report barriers in supporting patients regarding vaccines after cancer treatment. Our findings show that further research and interventions are needed to help bridge oncology care and primary care regarding immunizations after treatment.

Children's Oncology Group's 2023 blueprint for research: Non-Hodgkin lymphoma.

Pediatric non-Hodgkin lymphoma (NHL) includes over 30 histologies (many with subtypes), with approximately 800 cases per year in the United States. Improvements in survival in NHL over the past 5 decades align with the overall success of the cooperative trial model with dramatic improvements in outcomes. As an example, survival for advanced Burkitt lymphoma is now >95%. Major remaining challenges include survival for relapsed and refractory disease and long-term morbidity in NHL survivors. Langerhans cell histiocytosis (LCH) was added to the NHL Committee portfolio in recognition of LCH as a neoplastic disorder and the tremendous unmet need for improved outcomes. The goal of the Children' Oncology Group NHL Committee is to identify optimal cures for every child and young adult with NHL (and LCH). Further advances will require creative solutions, including engineering study groups to combine rare populations, biology-based eligibility, alternative endpoints, facilitating international collaborations, and coordinated correlative biology.

A phase II trial of nifurtimox combined with topotecan and cyclophosphamide for refractory or relapsed neuroblastoma and medulloblastoma.

Children with relapsed/refractory (R/R) neuroblastoma (NB) and medulloblastoma (MB) have poor outcomes. We evaluated the efficacy of nifurtimox (Nfx) in a clinical trial for children with R/R NB and MB. Subjects were divided into three strata: first relapse NB, multiply R/R NB, and R/R MB. All patients received Nfx (30 mg/kg/day divided TID daily), Topotecan (0.75 mg/m2 /dose, days 1-5) and Cyclophosphamide (250 mg/m2 /dose, days 1-5) every 3 weeks. Response was assessed after every two courses using International Neuroblastoma Response Criteria and Response Evaluation Criteria in Solid Tumors (RECIST) criteria. One hundred and twelve eligible patients were enrolled with 110 evaluable for safety and 76 evaluable for response. In stratum 1, there was a 53.9% response rate (CR + PR), and a 69.3% total benefit rate (CR + PR + SD), with an average time on therapy of 165.2 days. In stratum 2, there was a 16.3% response rate, and a 72.1% total benefit rate, and an average time on study of 158.4 days. In stratum 3, there was a 20% response rate and a 65% total benefit rate, an average time on therapy of 105.0 days. The most common side effects included bone marrow suppression and reversible neurologic complications. The combination of Nfx, topotecan and cyclophosphamide was tolerated, and the objective response rate plus SD of 69.8% in these heavily pretreated populations suggests that this combination is an effective option for patients with R/R NB and MB. Although few objective responses were observed, the high percentage of stabilization of disease and prolonged response rate in patients with multiply relapsed disease shows this combination therapy warrants further testing.

Geographic Access to Pediatric Cancer Care in the US.

Importance: Although access to pediatric cancer care has implications for use of such care and patient outcomes, little is known about the geographic accessibility of pediatric cancer care and how it may vary by population characteristics across the continental US. Objective: To estimate the travel time to pediatric cancer care settings in the continental US, identify potential disparities among subgroups of children and adolescents and young adults (AYAs), and identify areas needing improved access to pediatric cancer care. Design, Setting, and Participants: This cross-sectional study collected data from August 1 to December 1, 2021. Pediatric oncologists' service locations in 2021 served as the pediatric cancer care settings, data for which were scraped from 2 websites containing information about health professionals. Demographic characteristics for younger children and AYAs aged 0 to 21 years were obtained from the 2015 to 2019 American Community Survey 5-year estimates. Data were analyzed from January 1 to April 31, 2022. Main Outcomes and Measures: The main outcome was the travel time from geographic centroids of zip code tabulation areas to the nearest pediatric oncologist. The median (IQR) travel times for each demographic subgroup were estimated. Per capita pediatric oncologist supply was calculated by dividing the total number of pediatric oncologists for each state or US Census division by its population. Results: Of the 90 498 890 children and AYAs included in the study, 63.6% were estimated to travel less than 30 minutes and 19.7% to travel between 30 and 60 minutes (for a total of 83.3%) to the nearest pediatric oncologist. Median (IQR) travel times were longest for the American Indian or Alaska Native pediatric population (46 [16-104] minutes) and residents of rural areas (95 [68-135] minutes), areas with high deprivation levels (36 [13-72] minutes), and the South (24 [13-47] minutes) and Midwest (22 [11-51] minutes) compared with the general population of children and AYAs. The pediatric oncologist supply was lowest in Wyoming (0 oncologists per 100 000 pediatric population) and highest in Washington, DC (53.3 oncologists per 100 000 pediatric population). Pediatric oncologist supply across Census divisions was lowest in the Mountain division (3.3 oncologists per 100 000 pediatric population) and highest in the New England division (8.1 oncologists per 100 000 pediatric population). Conclusions and Relevance: Results of this study showed that most children and AYAs in the continental US had adequate access to pediatric cancer care, although disparities existed among racial and ethnic groups and residents in rural areas, areas with high deprivation levels, and some Southern and Midwestern states. Reducing these disparities may require innovative approaches, such as expanding the capabilities of local facilities and creating partnerships with adult oncology centers and primary care physicians.

Variation of Diagnostic Approaches and Treatment Practices for Hemophagocytic Lymphohistiocytosis/Macrophage Activation Syndrome Among Pediatric Subspecialists.

OBJECTIVE: To assess the diagnostic and treatment practices among a variety of subspecialists at pediatric institutions in the US. STUDY DESIGN: Using a web-based survey, we assessed the consultation, diagnostic, and treatment preferences of providers from the different pediatric subspecialties who care for pediatric patients with hemophagocytic lymphohistiocytosis (HLH)/macrophage activating syndrome (MAS). Domains included demographics, provider training level and specialty, experience and comfort level with the diagnosis and treatment of HLH/MAS, and institutional approaches toward the diagnosis and management of HLH/MAS. Participants also were given 2 case scenarios: one describing Epstein-Barr virus-associated HLH and another describing an underlying rheumatologic condition with MAS. RESULTS: Of 263 respondents, 23%, 29%, 39%, and 7% identified as hematology/oncology, rheumatology, general pediatrics/critical care/hospitalist, and allergy/immunology, respectively. For Epstein-Barr virus/HLH, hematology/oncology was the preferred first consultant by most respondents other than rheumatologists, of whom only 47% agreed. For MAS, 92% of respondents from all specialties favored a rheumatology consultation. Preferred diagnostic tests varied by subspecialty, with hematology/oncology more likely than rheumatology to order an infectious workup, natural killer cell function, soluble interleukin-2 receptor, bone marrow biopsy, and genetic testing. First-line therapy also varied, with hematology/oncology preferring dexamethasone and etoposide and rheumatology more often preferring methylprednisolone and anakinra. One-half of respondents were unaware of institutional algorithms for diagnosis and treatment of HLH/MAS. Most (85.6%) favored the development of treatment algorithms for HLH/MAS, and 90% supported a multidisciplinary approach. CONCLUSIONS: Current consulting patterns, diagnostic workup, and treatment approaches of HLH/MAS vary by specialty, highlighting the need for standardized management algorithms and institutional multidisciplinary HLH/MAS teams.

A qualitative inquiry of communication based barriers to the diagnosis of pediatric cancer: Perceptions of primarily Spanish-speaking caregivers.

BACKGROUND: Primarily Spanish-speaking cancer patients and caregivers often experience non-congruence with healthcare providers about beliefs, values, and knowledge of cancer. Our goal was to describe how communication related to the diagnosis of cancer was influenced by culture and language among primarily Spanish-speaking caregivers of pediatric cancer patients. METHODS: Caregivers participated in three focus groups about their experiences with their child's diagnosis, communication issues, and understanding of their child's diagnosis and treatment plan. Focus groups were audio recorded, transcribed, and qualitatively analyzed using interpretive description. RESULTS: Three themes emerged: 1) Negative experiences and barriers during the cancer diagnosis and treatment, 2) Miscommunication and system complexity, and 3) Language barriers throughout the diagnostic process. Due to barriers and negative experiences, some caregivers reported that their child's diagnosis was delayed, that providers sometimes used dehumanizing language, and that they were confused about diagnostic testing and treatment. CONCLUSION: Cultural and linguistic disparities in pediatric oncology must be systematically addressed at the provider, clinic, and system level. PRACTICE IMPLICATIONS: High-quality cancer care delivered by oncologists and cancer care teams should include cultural humility when discussing the cancer diagnosis and prognosis.

Molecular and phenotypic diversity of CBL-mutated juvenile myelomonocytic leukemia.

Mutations in the gene CBL were first identified in adults with various myeloid malignancies. Some patients with juvenile myelomonocytic leukemia (JMML) were also noted to harbor mutations in CBL, but were found to have generally less aggressive disease courses compared to other forms of Ras pathway-mutant JMML. Importantly, and in contrast to most reports in adults, the majority of CBL mutations in JMML patients are germline with acquired uniparental disomy occurring in affected marrow cells. Here, we systematically studied a large cohort of 33 JMML patients with CBL mutations and found this disease to be highly diverse in presentation and overall outcome. Moreover, we discovered somatically-acquired CBL mutations in 15% of pediatric patients who presented with more aggressive disease. Neither clinical features nor methylation profiling were able to distinguish somatic CBL patients from germline CBL patients, highlighting the need for germline testing. Overall, we demonstrate that disease courses are quite heterogeneous even among germline CBL patients. Prospective clinical trials are warranted to find ideal treatment strategies for this diverse cohort of patients.

Two Clonally Distinct B-Cell Lymphomas Reveal the Diagnosis of XLP1 in a Male Child and His Asymptomatic Male Relatives: Case Report and Review of the Literature.

X-linked lymphoproliferative disease type 1 (XLP1) is a primary immunodeficiency disorder caused by pathogenic variants in the SH2D1A gene (SH2 domain containing protein 1A). Patients with XLP1 may present acutely with fulminant infectious mononucleosis, hemophagocytic lymphohistiocytosis, and/or B-cell non-Hodgkin lymphoma (B-NHL). We report a boy who developed 2 clonally distinct B-NHL 4 years apart and was found to have previously unrecognized XLP1. The report highlights the importance of clonal analysis and XLP1 testing in males with presumed late recurrences of B-NHL, and the role of allogeneic stem cell transplant (allo-SCT) in XLP1 patients and their affected male relatives.

Influence of provider recommendations to restart vaccines after childhood cancer on caregiver intention to vaccinate.

PURPOSE: We studied the influence of oncology and primary care provider (PCP) recommendations on caregiver intentions to restart vaccines (e.g., catch-up or boosters) after cancer treatment. METHODS: We surveyed primary caregivers ages 18 or older with a child who had completed cancer treatment 3-36 months prior (N = 145) about demographics, child's vaccination status, and healthcare factors (e.g., provider recommendations, barriers, preferences for vaccination). We compared these factors by caregiver's intention to restart vaccines ("vaccine intention" vs. "no intent to vaccinate") using bivariate and multivariable analyses. RESULTS: Caregivers were primarily ages 30-39 years (54.9%), mothers (80.6%), college graduates (44.4%), non-Hispanic (89.2%), and married (88.2%). Overall, 34.5% of caregivers did not know which vaccines their child needed. However, 65.5% of caregivers reported vaccine intention. Fewer caregivers with no intention to vaccinate believed that vaccinating their child helps protect others (85.4 vs. 99.0%, p < 0.01), that vaccines are needed when diseases are rare (83.7 vs. 100.0%, p < 0.01), and that vaccines are safe (80.4 vs. 92.6%, p = 0.03) and effective (91.5 vs. 98.9%, p = 0.04) compared with vaccine intention caregivers, respectively. Provider recommendations increased caregivers' likelihood of vaccine intention (oncologist RR = 1.65, 95% CI 1.27-2.12, p < 0.01; PCP RR = 1.51, 95% CI 1.19-1.94, p < 0.01). CONCLUSIONS: Provider recommendations positively influence caregivers' intention to restart vaccines after childhood cancer. Guidelines are needed to support providers in making tailored vaccine recommendations. IMPLICATIONS FOR CANCER SURVIVORS: Timely vaccination after childhood cancer protects patients against vaccine-preventable diseases during survivorship. Caregivers may benefit from discussing restarting vaccinations after cancer with healthcare providers.

Severe Sepsis-Associated Morbidity and Mortality among Critically Ill Children with Cancer.

Severe sepsis (SS) in pediatric oncology patients is a leading cause of morbidity and mortality. We investigated the incidence of and risk factors for morbidity and mortality among children diagnosed with cancer from 2008 to 2012, and admitted with SS during the 3 years following cancer diagnosis. A total of 1,002 children with cancer were included, 8% of whom required pediatric intensive care unit (PICU) admission with SS. Death and/or multiple organ dysfunction syndrome occurred in 34 out of 99 PICU encounters (34%). Lactate level and history of stem-cell transplantation were significantly associated with the development of death and/or organ dysfunction ( p < 0.05).

HPV vaccination knowledge, intentions, and practices among caregivers of childhood cancer survivors.

The HPV vaccine is an important vaccine for childhood cancer survivors because of their risks of second cancers, yet few survivors receive it. We examined HPV vaccine knowledge among caregivers of childhood cancer survivors, whether their child had received the vaccine, and their intentions to vaccinate. Eligible participants were caregivers (mostly parents) whose child finished cancer treatment at Primary Children's Hospital in Salt Lake City, Utah 3 to 36 months prior to the start of the study (N = 145). Additional analyses were done among caregivers whose child was age-eligible for the HPV vaccine (ages 11 and up; N = 61). We ran descriptive statistics and fit multivariable generalized linear models to identify factors associated with intention to vaccinate and HPV vaccination uptake. Among caregivers whose child had not yet gotten the HPV vaccine, approximately 30% stated they were not likely to get the vaccine for their child and the most commonly cited reason was not enough information (25.2%). Provider discussion about vaccines and side effects (relative risk (RR) = 1.85, 95% CI 1.16-2.94), along with recommendations regarding vaccines after cancer treatment (RR = 1.35, 95% CI 1.06-1.72), led to greater caregiver intention to get the HPV vaccine for their child with cancer. Approximately 40% of age-eligible survivors had gotten at least one dose of the HPV vaccine. Our findings demonstrate a need for oncology-focused interventions to educate families of childhood cancer survivors about the importance of the HPV vaccine after cancer therapy.

Respiratory emergency department use from diagnosis through survivorship in children, adolescents, and young adults with cancer.

BACKGROUND: Children and adolescents and young adults (AYAs) with cancer often experience severe respiratory morbidity and mortality from the therapies used to treat their cancers. Few studies have examined respiratory outcomes among this population using emergency department (ED) visits as an objective measure of respiratory health. METHODS: ED visits for respiratory conditions were identified for children and AYAs diagnosed with cancer, 0-25 years of age, from 1997 through 2012 (2535 cases) and compared with a birthdate-matched and sex-matched cohort without cancer drawn from the general population (7605 controls). Negative binomial regression with robust standard errors was used to estimate incidence rates, rate ratios (RRs), and 95% confidence intervals for primary respiratory ED visits, combined and by diagnosis (asthma, respiratory disease, and respiratory infection) from 1997 through 2015. Analyses were performed for new cases (0 to <5 years from diagnosis) and survivors (5-18 years from diagnosis). RESULTS: Subjects were followed for an average of 8 years (range, 0-18 years). Relative to the comparison cohort, cancer cases had higher incidence rates for all types of respiratory ED visits over both follow-up times. New cases had significantly higher RRs for any respiratory condition (RR, 4.14), respiratory disease (RR, 4.62), and respiratory infection (RR, 4.74). Among survivors, the RRs for any respiratory condition (RR, 2.00) and respiratory infection (RR, 2.10) were significantly elevated, although the magnitude tended to decline in survivorship. Demographic and clinical risk factors found to be associated with respiratory ED visits included Hispanic/other race/ethnicity, male sex, exposure to chemotherapy, diagnosis at a younger age, and a diagnosis of leukemia. CONCLUSIONS: The results of the current study demonstrated that children and AYAs with cancer face an increased burden of respiratory complications compared with a comparison cohort without cancer from diagnosis through survivorship.

Social Media Use Among Parents and Caregivers of Children With Cancer.

Social media as an effective source of information and support among parents and other caregivers of children with cancer has not been explored. The purpose of this cross-sectional study was to describe caregivers' reasons for using social media, social media sites used, and predictors of social media usage. This study sample included 215 caregivers (96% parents) of children with cancer receiving cancer-related care at a tertiary children's hospital in the Intermountain West. Most of caregivers (74%) reported using social media in relation to their child's cancer and reported using social media to provide and receive support and information about their child's diagnosis or treatment. Our findings suggest that social media could be a delivery platform for future interventions seeking to meet the informational and emotional needs of caregivers of children with cancer. An awareness of how parents and caregivers of children receiving cancer-related treatment use social media can help nurses understand their ongoing informational and emotional needs. Nurses can also support parents and caregivers in selecting reputable sources of support that are accessible via social media.

Adherence to Oral Medications During Maintenance Therapy Among Children and Adolescents With Acute Lymphoblastic Leukemia: A Medication Refill Analysis.

Adherence to oral medications during maintenance therapy is essential for pediatric patients with acute lymphoblastic leukemia. Self-reported or electronic monitoring of adherence indicate suboptimal adherence, particularly among particular sociodemographic groups. This study used medication refill records to examine adherence among a national sample of pediatric patients with acute lymphoblastic leukemia. Patients in a national claims database, aged 0 to 21 years with a diagnosis of acute lymphoblastic leukemia and in the maintenance phase of treatment, were included. Medication possession ratios were used as measures of adherence. Overall adherence and adherence by sociodemographic groups were examined. Adherence rates were 85% for 6-mercaptopurine and 81% for methotrexate. Adherence was poorer among patients 12 years and older. Oral medication adherence rates were suboptimal and similar to or lower than previously documented rates using other methods of assessing adherence. Refill records offer a promising avenue for monitoring adherence. Additional work to identify groups most at-risk for poor adherence is needed. Nurses are well positioned to routinely monitor for medication adherence and to collaborate with the multidisciplinary team to address barriers to adherence.

Risk of hospitalization among survivors of childhood and adolescent acute lymphoblastic leukemia compared to siblings and a general population sample.

BACKGROUND: Acute Lymphoblastic Leukemia (ALL) has a high survival rate, but cancer-related late effects in the early post-treatment years need documentation. Hospitalizations are an indicator of the burden of late effects. We identify rates and risk factors for hospitalization from five to ten years after diagnosis for childhood and adolescent ALL survivors compared to siblings and a matched population sample. METHODS: 176 ALL survivors were diagnosed at ≤22 years between 1998 and 2008 and treated at an Intermountain Healthcare facility. The Utah Population Database identified siblings, an age- and sex-matched sample of the Utah population, and statewide inpatient hospital discharges. Sex- and birth year-adjusted Poisson models with Generalized Estimating Equations and robust standard errors calculated rates and rate ratios. Cox proportional hazards models identified demographic and clinical risk factors for hospitalizations among survivors. RESULTS: Hospitalization rates for survivors (Rate:3.76, 95% CI=2.22-6.36) were higher than siblings (Rate:2.69, 95% CI=1.01-7.18) and the population sample (Rate:1.87, 95% CI=1.13-3.09). Compared to siblings and population comparisons, rate ratios (RR) were significantly higher for survivors diagnosed between age 6 and 22 years (RR:2.87, 95% CI=1.03-7.97 vs siblings; RR:2.66, 95% CI=1.17-6.04 vs population comparisons). Rate ratios for diagnosis between 2004 and 2008 were significantly higher compared to the population sample (RR:4.29, 95% CI=1.49, 12.32), but not siblings (RR:2.73, 95% CI=0.54, 13.68). Survivors originally diagnosed with high-risk ALL did not have a significantly higher risk than siblings or population comparators. However, high-risk ALL survivors (Hazard ratio [HR]:3.36, 95% CI=1.33-8.45) and survivors diagnosed from 2004 to 2008 (HR:9.48, 95% CI=1.93-46.59) had the highest risk compared to their survivor counterparts. CONCLUSIONS: Five to ten years after diagnosis is a sensitive time period for hospitalizations in the ALL population. Survivors of childhood ALL require better long-term surveillance.

Infection-related mortality in Hispanic and non-Hispanic children with cancer.

BACKGROUND: Hispanic children with cancer experience poorer survival than their White counterparts. Infection is a known cause of cancer-related mortality; however, little is known about the risk of infection-related death among Hispanic children with cancer. We examine the association of Hispanic ethnicity with infection-related mortality and life-threatening events among children with cancer. PROCEDURE: For a cohort of all pediatric cancer patients diagnosed from 1986 to 2012 and treated at a single tertiary care center, we obtained national death records to determine all-cause mortality and infection-related mortality, as well as intensive care unit (ICU) admissions as a surrogate for life-threatening events. Cox proportional hazard models assessed all-cause mortality and infection-related mortality using ethnicity as the main independent variable. ICU admission rates were modeled using a zero-inflated Poisson regression model. Models were adjusted for gender, diagnosis year, age, residential location, and diagnosis. RESULTS: Of 6,198 patients, 741 (12%) were Hispanic. Mean follow-up was 11 years (SD = 8.04). There were 1,205 deaths, with 193 attributable to infection. Differences in all-cause mortality between Hispanic and non-Hispanic patients did not reach significance (hazard ratio [HR] = 1.14, 95% confidence interval [CI]: 0.96-1.36). However, Hispanic patients were 68% (HR = 1.68, 95% CI: 1.16-2.43) more likely to have an infection-related cause of death. Hispanic ethnicity was statistically associated with a higher rate of ICU admissions (rate ratio = 1.32, 95% CI: 1.12-1.56). CONCLUSION: Hispanic pediatric cancer patients were more likely to have an infection-related death and higher rates of ICU admissions than non-Hispanic patients. Infection may be an overlooked contributor to poorer outcomes among Hispanic patients.

The impact of language barriers and immigration status on the care experience for Spanish-speaking caregivers of patients with pediatric cancer.

BACKGROUND: An increasing proportion of pediatric cancer patients in the United States are Latino and many have Spanish-speaking immigrant parents with limited English proficiency (LEP). Little is known about how language or undocumented immigration status impacts their care experience. PROCEDURE: A cross-sectional survey was administered to English (N = 310) and Spanish-speaking LEP (N = 56) caregivers of pediatric cancer patients. To assess differences in healthcare experiences between the language groups, t-tests and chi-square statistics were used. Multivariable logistic regression evaluated associations between primary language and knowledge of clinical trial status. RESULTS: Spanish-speaking caregivers were more likely to report higher rates of quitting or changing jobs as a direct result of their child's cancer, and their children were more likely to experience a delay in education. Although Spanish-speaking caregivers reported higher satisfaction with care, 32% reported feeling that their child would have received better care if English was their primary language. Spanish-speaking caregivers were more likely to incorrectly identify whether their child was on a clinical trial compared with English-speaking caregivers. The majority of Spanish-speaking caregivers reported at least one undocumented caregiver in the household and 11% of them avoided or delayed medical care for their child due to concerns over their undocumented immigration status. CONCLUSIONS: Language barriers and undocumented immigration status may negatively impact the quality of informed decision-making and the care experience for Spanish-speaking LEP caregivers of pediatric cancer patients. These families may benefit from culturally appropriate Spanish language resources to improve communication and open a dialogue regarding undocumented immigration status.

Health care experiences of long-term survivors of adolescent and young adult cancer.

PURPOSE: Evaluate health care access and experiences with care among long-term survivors of adolescent and young adult (AYA) cancer relative to a comparison group in the USA. METHODS: The 2008 to 2012 Medical Expenditure Panel Surveys identified 1163 survivors of cancer, diagnosed ages 15-39, current ages 20-64, who were at least 5 years after diagnosis. A comparison group without cancer was matched using age, sex, and other characteristics. Primary outcomes included having ≥1 visit to doctor's office/clinic in the previous year and perceived health care quality (0 = worst to 10 = best; categorized as low (0-4), intermediate (5-7), and high (8-10)). Other experience-related outcomes (e.g., having adequate time with providers and providers show respect) were also evaluated. Bivariate analyses compared these outcomes between survivors and the comparison group. Multivariable logistic regressions identified survivor-level factors associated with health care visits and quality. RESULTS: Survivors had ≥1 visit more often (82.1 vs. 75.8 %, p = 0.005) yet rated their health care quality lower (low or intermediate 30.7 vs. 23.6 %, p < 0.001) than the comparison group. Fewer survivors reported always having enough time with providers (41.7 vs. 54.6 %, p < 0.001) and that providers always show respect (57.5 vs. 67.7 %, p = 0.002). Uninsured survivors were less likely to have ≥1 visit (odds ratio (OR) = 0.26, 95 % confidence interval (CI) 0.17-0.40, p < 0.001) and rated their health care quality lower (OR = 0.25, 95 % CI 0.13-0.48, p < 0.001) than privately insured. Many other factors were associated with visits and quality. CONCLUSION: Survivors of AYA cancer reported more health care visits but worse health care experiences than individuals without cancer. Targeted interventions that may improve survivors' experiences with health care should be evaluated.