Publications by authors named "Joanna Robles"

Background: Robust evidence demonstrates inequities in communication during family-centered rounds for families who use a language other than English (LOE) for health care. This study aimed to characterize the type of interpreter alterations occurring on family-centered rounds and identify medical team communication practices associated with alterations.

Methods: In this observational study of interpreter-supported family-centered rounds, we recorded and transcribed family-centered rounds encounters for Spanish-speaking families.

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Language discordance between clinicians and families in pediatrics has been associated with adverse events and lower quality of care. We aimed to summarize the existing literature evaluating the impact of language discordance among healthcare professionals and families within pediatric oncology by conducting a systematic review. Of 8364 studies, 43 studies met eligibility for inclusion in this review.

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Background: Increasing representation in clinical trials is a priority for the National Cancer Institute and Children's Oncology Group (COG). Our survey of COG-affiliated institutions revealed that many sites have insufficient processes and resources to enroll children whose parents use languages other than English (LOE). We describe reported barriers and facilitators to enrolling children in clinical trials when parents use LOE and propose opportunities for improvement.

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Background: Timely diagnosis of childhood cancer, early hospital presentation and completion of treatment significantly improve outcomes. Unfortunately, in Tanzania, thousands of children die of cancer each year without ever being diagnosed or treated. To reduce childhood death from cancer, it is important to understand the social-cultural context, values and beliefs that influence healthcare-seeking behaviours among the Tanzanian community.

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Hispanic children with acute lymphoblastic leukemia (ALL) have lower 6-mercaptopurine (6MP) adherence and greater hazard of relapse compared with non-Hispanic White children. We examined the association between Spanish language and 6MP adherence, and hazard of relapse. 6MP adherence was measured electronically over a 6-month period.

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Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews.

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Background: Persons who speak languages other than English are underrepresented in clinical trials, likely in part because of inadequate multilevel resources. We conducted a survey of institutions affiliated with the Children's Oncology Group (COG) to characterize current research recruitment practices and resources regarding translation and interpretation services.

Methods: In October 2022, a 20-item survey was distributed electronically to institutions affiliated with COG to assess consent practices and resources for recruiting participants who speak languages other than English to COG trials.

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Background: The healthcare costs of patients who receive hematopoietic stem cell transplantation (HSCT) are substantial. At the same time, the increasing use of pediatric HSCT leaves more caregivers of pediatric HSCT recipients at risk for financial burden-an understudied area of research.

Methods: Financial burden experienced by caregivers of recipients who received autologous or allogeneic transplants was assessed using an explanatory mixed-methods design including a one-time survey and semi-structured interviews.

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Article Synopsis
  • Pediatric solid tumors, like Wilms tumor, pose significant financial burdens on families, leading to a growing need for assessing the financial toxicity of treatment.
  • A webscraping algorithm was used to analyze crowdfunding campaigns on GoFundMe for children diagnosed with Wilms tumor, focusing on the demographics and challenges faced by these families.
  • The study found that a significant percentage of families experienced employment loss and high direct and indirect costs related to care, while it identified essential features that correlate with successful fundraising efforts.
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The Children's Oncology Group (COG) Diversity and Health Disparities Committee's (DHDC's) mission is to guarantee the highest standard of care for children and adolescents and young adults (AYA) with cancer regardless of ethnic, racial, gender, or socioeconomic background. We strive to identify and address issues of disparity within the existing scientific structure of COG and to support research across COG to improve survival by ensuring equitable access to COG-sponsored clinical trials. We are committed to advance COG-led research identifying mechanistic drivers of disparities and, concurrently, evaluating interventions to alleviate disparities in the COG trial setting.

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Background And Objectives: New childhood cancer diagnoses require timely, complex care coordination and cause considerable logistic burden for families. We used renal tumors as a model to examine healthcare utilization and cost following new solid tumor diagnosis.

Methods: Children (ages 0-21) with International Classification of Disease (ICD) codes for renal malignancy and subsequent nephrectomy were identified from North Carolina Medicaid claims data (2014-2020).

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Article Synopsis
  • A multi-center study reviewed 36 cases of pediatric patients with EBV(-)M-PTLD, highlighting demographics, treatment regimens, and outcomes between 2001 and 2020.
  • Results showed a median follow-up of 3 years, with 3-year event-free survival at 64.8% and overall survival at 79.9%, suggesting outcomes similar to EBV(+) PTLD but less favorable than mature B-cell lymphoma in healthy children.
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Article Synopsis
  • - PSOT-BL, a rare and aggressive form of cancer in children post-organ transplantation, was studied in 35 patients across 14 hospitals in the U.S., with a median age of diagnosis at 8 years, mostly occurring over 2 years after transplant.
  • - The most commonly transplanted organs were the heart and liver, and despite the severity of the disease, patients did not experience graft loss or treatment-related deaths.
  • - Various treatment regimens were employed, showing a 3-year event-free survival rate of 66.2% and overall survival rate of 88%, indicating that intensive treatments for PSOT-BL can achieve outcomes similar to those in healthy children with Burkitt lymphoma.
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Article Synopsis
  • The study aimed to evaluate how communication quality during family-centered rounds differed among caregivers of various racial and ethnic backgrounds.
  • Researchers conducted an observational study involving surveys and audio recordings of caregiver interactions with medical teams, analyzing both objective and subjective communication quality.
  • The results showed that Black and Latinx caregivers experienced significantly lower levels of participation, respect, and partnership compared to white caregivers, highlighting disparities in healthcare communication.
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Context: The prevalence of venous thromboembolism (VTE) in patients with cancer is particularly high at disease progression and during relapse. Patients cared for in specialized palliative care units (SPCU) are rarely included in VTE studies. Objective: We sought to study the prevalence, clinical characteristics, and survival of individuals with VTE in an SPCU setting.

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Purpose: Pediatric hematopoietic stem cell transplantation (HSCT) confers a substantial financial burden onto patients' families. In addition to high direct medical costs, HSCTs typically require at least one caregiver to take time away from work or other responsibilities, often leading to reduced household income. Using mixed methods, we sought to understand the impact of pediatric HSCT on caregiver employment and financial need.

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Background: Limited English proficiency (LEP) is associated with adverse clinical outcomes. The clinical impact of LEP in hematopoietic stem cell transplant (HSCT) has not been studied. The objectives of this study were to compare HSCT outcomes and health care utilization of Hispanic pediatric patients with and without parental LEP.

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