Impact of the COVID-19 pandemic in childhood and adolescent cancer care in northern Tanzania: a cross-sectional study.

INTRODUCTION: The SARS-CoV-2 (COVID-19) pandemic has strained healthcare systems and presented unique challenges for children requiring cancer care, particularly in low- and middle-income countries. This study aimed to assess the impact of the COVID-19 pandemic on access to cancer care for children and adolescents in Northern Tanzania. METHODS: In this cross-sectional study, we assessed the demographic and clinical characteristics of 547 pediatric and adolescent cancer patients (ages 0-19 years old) between 2016 and 2022 using the population-based Kilimanjaro Cancer Registry (KCR). We categorized data into pre-COVID-19 (2016-2019) and COVID-19 (2020-2022) eras, and performed descriptive analyses of diagnostic, treatment, and demographic information. A secondary analysis was conducted on a subset of 167 patients with stage of diagnosis at presentation. RESULTS: Overall admissions nearly doubled during the pandemic (n = 190 versus 357). The variety of diagnoses attended at KCMC increased during the pandemic, with only five groups of diseases reported in 2016 to twelve groups of diseases in 2021. Most patients were diagnosed at a late stage (stage III or IV) across eras, with the proportion of under-five years old patients increasing late-diagnoses from 29.4% (before the pandemic), 52.8% (during the pandemic), when compared to the overall cohort. Around 95% of children in this age category reported late-stage diagnosis during the pandemic. Six out of the twelve cancer site groups also reported an increase in late-stage diagnosis. During the pandemic, the proportion of children receiving surgery increased from 15.8 to 30.8% (p < 0.001). CONCLUSION: Childhood and adolescent cancer care changed in Northern Tanzania during the COVID-19 pandemic, with increased late-stage diagnoses presentations among younger patients and the increased use of surgical therapies in the context of a growing practice. Understanding the impact of the COVID-19 pandemic on pediatric and adolescent cancer care can help us better adapt healthcare systems and interventions to the emerging needs of children and adolescents with cancer in the midst of a health crisis.

"Everyone screens to some extent": Barriers and facilitators of developmental screening among children with sickle cell disease: A mixed methods study.

BACKGROUND: Developmental delays are common among children with sickle cell disease (SCD). Existing guidelines support consistent screening to increase the identification of deficits and support referral to rehabilitative interventions, yet adherence remains variable. This study sought to assess current practices and identify barriers and facilitators to improve developmental screening for children 0-3 years with SCD. PROCEDURE: A mixed methods approach, guided by the Exploration and Preparation stages of the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework, assessed developmental screening practices among primary care providers and hematologists. Phase 1 included the SCD Developmental Surveillance and Screening Guideline and Practice Survey. Phase 2 included the SCD Developmental Screening Organizational Survey alongside semi-structured interviews. Descriptive and qualitative methods summarized the findings. RESULTS: Thirty-three providers from general pediatrics and hematology completed phase 1. Use of standardized developmental screening measures was variable, with the most frequently used being the Modified Checklist for Autism in Toddlers (77%) and the Ages and Stages Questionnaire (55%). Fifteen providers participated in phase 2, and reported they were most likely to engage in changes to improve their practice (mean = 4.4/5) and least likely to support spiritual health and well-being (mean = 3.5/5). Three themes emerged:(i) developmental screening is not standardized or specific to SCD, (ii) children with SCD benefit from a multidisciplinary team, and (iii) healthcare system limitations are a barrier. CONCLUSIONS: Developmental screening is inconsistent and insufficient for young children with SCD. Providers are interested in supporting children with SCD, but report a lack of standardized measures and consistent guidance as barriers.

The hidden costs: a qualitative analysis exploring the experience of prostate cancer treatment-related side effects on sexual function and urinary incontinence among Black survivors and their caregivers.

PURPOSE: Prostate cancer (PCa) disproportionately affects Black men in the U.S., leading to high incidence and mortality rates. Post-treatment challenges, such as sexual dysfunction and urinary incontinence, significantly impact quality of life yet are frequently overlooked. The purpose of this study was to characterize the experience of treatment-related side effects around sexual function and urinary incontinence among Black survivors of PCa and their caregivers. METHODS: We conducted semi-structured virtual interviews with 11 Black survivors of PCa and 11 caregivers (22 total participants). Survivors were eligible if they were diagnosed and treated for PCa within the last decade and caregivers were eligible if they self-identified as a caregiver for a Black survivor. Interviews were transcribed verbatim and analyzed using a qualitative descriptive approach. RESULTS: During interviews, participants spontaneously discussed topics covering sexual dysfunction and urinary incontinence. Key themes identified from interview discussions included the physical experience of PCa treatment, knowledge of the impact of PCa treatment on life quality, and the process of navigating survivorship care. Although they received peer and familial support, survivors expressed a desire for clinicians to initiate discussions on sexual dysfunction and urinary incontinence. Caregivers recounted their experiences while providing support to the survivor. CONCLUSIONS: The findings underscore the need for clinicians to prioritize discussions on sexual dysfunction and urinary incontinence with patients, and for enhancement of care pathways and resources for these issues in survivorship care. IMPLICATIONS FOR CANCER SURVIVORS: Trained professionals, such as occupational and physical therapists, social workers, genetic counselors, and psychologists, have the potential to fill this survivorship care gap.

"I Just Had to Do What I Had to Do": Characterizing Direct and Indirect Prostate Cancer Treatment Costs for Black Survivors and Their Caregivers.

Introduction. Financial hardship is prevalent among Black prostate cancer survivors and exacerbates health disparities. Characterizing and sharing cost information with patients can facilitate well-informed treatment decision making. Our research explored the direct and indirect costs associated with prostate cancer treatment among Black men and their caregivers. Direct costs included out-of-pocket and insurance-related fees, and indirect costs included the unforeseen costs of care, including patient time, caregiver time, lost wages, and transportation. Methods. We conducted semi-structured interviews with Black prostate cancer survivors and their caregivers to learn about the experience of direct and indirect costs. The interview guide and data analysis were informed by the Measures of Financial Wellbeing framework to gain a better understanding of the material, behavioral, and psychosocial aspects of care-related costs. Guided by a qualitative descriptive approach, we used inductive and deductive coding for our thematic analysis. Results. Eleven prostate cancer survivors with a median age of 68 y (interquartile range [IQR] 62.0-71.5 y) and 11 caregivers with a median age of 64 y (IQR 58.5-70.5 y) participated. We grouped themes into 3 domains and their intersections (i.e., material, behavioral, psychosocial). Participants reported their work and insurance had a significant influence on their finances, treatment costs required rearranging of household budgets, and the weight of indirect costs varied. Ultimately, participants emphasized the significant impact of care costs and the adjustments needed to adapt to them. Discussion. The complexities of material, behavioral, and psychosocial domains of direct and indirect costs of prostate cancer are critical to address when supporting those diagnosed with prostate cancer when making preference-sensitive treatment decisions. The interconnectedness between indirect costs highlights the wide-ranging impact financial well-being has on prostate cancer survivors and caregivers. Highlights: Direct and indirect costs have a wide-ranging impact on the material, behavioral, and psychosocial aspects of financial well-being of Black prostate cancer survivors and their caregivers.These results emphasize the need for sharing cost information to support medical decision making.Future research should focus on the design of cost-sharing interventions that target the complexities of direct and indirect costs collectively, rather than separately.

Improved accuracy and efficiency of primary care fall risk screening of older adults using a machine learning approach.

BACKGROUND: While many falls are preventable, they remain a leading cause of injury and death in older adults. Primary care clinics largely rely on screening questionnaires to identify people at risk of falls. Limitations of standard fall risk screening questionnaires include suboptimal accuracy, missing data, and non-standard formats, which hinder early identification of risk and prevention of fall injury. We used machine learning methods to develop and evaluate electronic health record (EHR)-based tools to identify older adults at risk of fall-related injuries in a primary care population and compared this approach to standard fall screening questionnaires. METHODS: Using patient-level clinical data from an integrated healthcare system consisting of 16-member institutions, we conducted a case-control study to develop and evaluate prediction models for fall-related injuries in older adults. Questionnaire-derived prediction with three questions from a commonly used fall risk screening tool was evaluated. We then developed four temporal machine learning models using routinely available longitudinal EHR data to predict the future risk of fall injury. We also developed a fall injury-prevention clinical decision support (CDS) implementation prototype to link preventative interventions to patient-specific fall injury risk factors. RESULTS: Questionnaire-based risk screening achieved area under the receiver operating characteristic curve (AUC) up to 0.59 with 23% to 33% similarity for each pair of three fall injury screening questions. EHR-based machine learning risk screening showed significantly improved performance (best AUROC = 0.76), with similar prediction performance between 6-month and one-year prediction models. CONCLUSIONS: The current method of questionnaire-based fall risk screening of older adults is suboptimal with redundant items, inadequate precision, and no linkage to prevention. A machine learning fall injury prediction method can accurately predict risk with superior sensitivity while freeing up clinical time for initiating personalized fall prevention interventions. The developed algorithm and data science pipeline can impact routine primary care fall prevention practice.

Delays in cancer care for children in low-income and middle-income countries: development of a composite vulnerability index.

BACKGROUND: Early access to diagnosis and care is essential to improve rates of survival from childhood cancer, particularly in low-income and middle-income countries (LMICs). Composite indices are increasingly used to compare country performance in many health fields. We aimed to develop a composite vulnerability index of risk of mortality associated with delays in care for childhood cancer in LMICs, and to compare the vulnerability index scores across countries. METHODS: The composite vulnerability index was built in ten steps. A previous systematic review of determinants of delays in cancer care for children guided data selection. We collected exposure variables (determinants of delays in care) and outcome variables (childhood cancer-related mortality) from several large datasets. Data were analysed with regression models to identify determinants of delays in care that contribute to childhood cancer mortality. Significant indicators were aggregated into domains according to the socio-ecological model. We used geospatial tools to summarise and compare the composite vulnerability index scores across countries. FINDINGS: We found that life expectancy, maternal education, fertility rate, availability of pathology services, bone marrow transplantation capacity, availability of treatment services (chemotherapy, radiotherapy, or surgery), number of pharmacists per 10 000 population, country income level, and out-of-pocket health expenditure were significantly associated with cancer mortality for children in LMICs. The highest levels of vulnerability were found in sub-Saharan Africa. INTERPRETATION: Our composite vulnerability index can potentially serve as a valuable policy decision tool to help monitor country performance and guide interventions to reduce delays in care for children with cancer in LMICs. FUNDING: None. TRANSLATIONS: For the Chinese, Portuguese, Arabic, Spanish and Swahili translations of the abstract see Supplementary Materials section.

Financial burden of men with localized prostate cancer: a process paper.

Background: Many individuals undergoing cancer treatment experience substantial financial hardship, often referred to as financial toxicity (FT). Those undergoing prostate cancer treatment may experience FT and its impact can exacerbate disparate health outcomes. Localized prostate cancer treatment options include: radiation, surgery, and/or active surveillance. Quality of life tradeoffs and costs differ between treatment options. In this project, our aim was to quantify direct healthcare costs to support patients and clinicians as they discuss prostate cancer treatment options. We provide the transparent steps to estimate healthcare costs associated with treatment for localized prostate cancer among the privately insured population using a large claims dataset. Methods: To quantify the costs associated with their prostate cancer treatment, we used data from the Truven Health Analytics MarketScan Commercial Claims and Encounters, including MarketScan Medicaid, and peer reviewed literature. Strategies to estimate costs included: (1) identifying the problem, (2) engaging a multidisciplinary team, (3) reviewing the literature and identifying the database, (4) identifying outcomes, (5) defining the cohort, and (6) designing the analytic plan. The costs consist of patient, clinician, and system/facility costs, at 1-year, 3-years, and 5-years following diagnosis. Results: We outline our specific strategies to estimate costs, including: defining complex research questions, defining the study population, defining initial prostate cancer treatment, linking facility and provider level related costs, and developing a shared understanding of definitions on our research team. Discussion and next steps: Analyses are underway. We plan to include these costs in a prostate cancer patient decision aid alongside other clinical tradeoffs.