Purpose Although most children diagnosed with cancer live in low- and middle-income countries (LMICs), research exploring decision making in these settings remains sparse. When children present with advanced cancer in LMICs, local centers may lack resources to provide treatment required to achieve cure. Existing treatment guidelines often do not account for contextual and resource variations influencing decision making. This qualitative study sought to understand physician approaches to treatment decision making for children presenting with advanced cancer at diagnosis in LMICs. Methods Semistructured interviews were conducted with 36 physicians caring for children with cancer across all world regions and representing diverse income levels. Interviews were conducted in English, audio-recorded, and transcribed. Inductive content analysis focused on decision-making approaches. Results Most participants were female (n = 24; 67%), older than 36 years (n = 32; 89%), and practiced at centers caring for >100 new childhood cancer cases annually (n = 26; 72%) in lower-middle-income countries (n = 20; 55%). A spectrum of cancers were reported as advanced at diagnosis, with no single diagnosis predominating. Physicians generally recommended four treatment approaches (eg, curative-intent, non-curative-intent, referral, or limited chemotherapy trial), resulting in seven outcome pathways based on whether a family accepted, challenged, or declined the proposed treatment. Four decision-making approaches (eg, physician-led, family-led, participatory, or externally influenced) informed determinations of goals of care focused on optimizing prognostic outcomes, providing individualized care, and committing to treating all children, irrespective of differences in patient/family circumstances. Conclusion Physicians caring for children with cancer in LMICs navigate complex treatment decision making, considering diverse treatment paths and goals. Pragmatic, evidence-based interventions are needed to guide decision making, flexible to local constraints.

Patient navigation is generally defined as an individualized service that breaks down barriers to provide comprehensive and equitable cancer care. As the evidence base grows for patient navigation efficacy in diverse settings across the cancer continuum, navigation is increasingly recognized and adopted as an essential resource to aid in linking to and advocating for patient-centered services. To further patient navigation as a core component of cancer care, the American Cancer Society formed the Global Alliance for Cancer Patient Navigation to build awareness, evidence, and momentum and to coalesce around the core principles to aid sustainable implementation, keeping the voiced needs of people with lived experience at the forefront.

Despite a decrease in child mortality since the establishment of the Millennium Development Goals, children and young people (CYP) continue to face threats to their health and well-being, including acute and chronic diseases, mental illness, and trauma-related injury. Qualitative research is underutilized in certain contexts, yet it is an essential methodology to advance child health outcomes. This paper presents recommendations generated by multidisciplinary experts at the Symposium on Applied Qualitative Research, outlining a value proposition for qualitative inquiry to illuminate the complex social, economic, and environmental factors affecting CYP. We advocate for greater integration of qualitative approaches in paediatrics to center the perspectives, experiences, needs, and preferences of CYP across the research continuum. We also discuss challenges in applied qualitative research in paediatrics and propose expert recommendations to guide best practices to ensure the quality and credibility of qualitative approaches, with the goal of advancing inclusive, responsive, and effective child health interventions, programs, and policies worldwide.

BACKGROUND:Inaccurate or imprecise diagnosis is a major contributor to treatment failure for children with cancer in low- and middle-income countries (LMICs). Sequencing-based diagnostic testing presents an opportunity to overcome diagnostic deficiencies. It is important to identify facilitators and barriers which are common to the implementation of sequencing-based diagnostics in LMICs. PROCEDURE:Pediatric oncology research collaborators at six hospitals in LMICs were invited to participate in the study. Snowball sampling identified additional participants. Thirty-nine virtual, semi-structured interviews were conducted using interview guides informed by the Consolidated Framework for Implementation Research (CFIR) with suggested adaptations for LMICs. Rapid qualitative analysis was conducted to identify facilitators and barriers to the implementation of diagnostic sequencing for pediatric cancers. Barriers were then matched with expert recommendation for implementation change (ERIC) strategies. RESULTS:Implementation facilitators and barriers were organized by CFIR construct. Predominant facilitators were relative advantage, culture, collective efficacy, self-efficacy, patient needs and resources, leadership engagement, knowledge and beliefs, tension for change, monitoring services for action, and implementation climate. Key barriers to implementation were cost, available resources, resource continuity, engaging participants, and resource source. CONCLUSIONS:Participants communicated that the lack of diagnostic classification for pediatric cancer in LMICs is a common key limitation to current cancer care. They described considerable motivating strengths to leverage toward this goal of developing sequencing-based diagnostic testing capacity. Resource availability, continuity, and sustainability are current barriers that must be addressed. Our data highlight the urgent need for creative global implementation partnerships as many centers in LMICs are poised to advance novel diagnostic solutions.

Abstract Background and Aims Primary central nervous system (CNS) tumors are the second leading cause of childhood cancer in Peru. Despite early symptom onset, delays in diagnosis and referral to specialized care remain frequent in low- and middle-income settings. These delays are influenced by both caregiver-related and health system–level factors. This study aimed to quantify diagnostic and referral delays and explore perceived barriers reported by caregivers and healthcare workers. Methods We conducted a mixed-methods study. The quantitative component was a descriptive, prospective, longitudinal study including 76 pediatric patients (0–18 years) with CNS tumors referred to the Instituto Nacional de Enfermedades Neoplásicas (INEN) between September 2023 and April 2024. Data on healthcare pathways and diagnostic and referral intervals were prospectively collected and analyzed descriptively. The qualitative component consisted of semi-structured interviews with 15 caregivers and 37 healthcare workers from three tertiary institutions in Peru. Interviews were audio-recorded, transcribed, and thematically analyzed using MAXQDA software. Quantitative and qualitative findings were integrated during interpretation. Results The median patient age was 9 years (IQR 6–12). The majority were insured under the government insurance system (SIS, 93.4%).Headache was the most common presenting symptom (44.7%). Patients presented with a median of three symptoms (IQR 2.5–4) and consulted an average of four healthcare professionals (IQR 3–5) before receiving a CNS tumor diagnosis. Although time from symptom onset to first consultation was short (median <1 day), substantial delays followed, including 32 days to diagnostic imaging and 28 days from surgery to arrival at INEN. Computed tomography was the most frequently used initial imaging modality (69.7%). Caregivers and healthcare workers reported financial (indirect costs) and logistical barriers, limited access to diagnostic studies, institutional saturation, bed shortages, and complex referral processes. Caregivers additionally described long waiting times, difficulties navigating the healthcare system and shortage of trained professionals. These barriers varied by location, with Lima facing shortages in diagnostic services, while patients in other regions encountered geographical challenges and limited resources to understand cancer and its treatment. Conclusions Delays in pediatric CNS tumor diagnosis and referral in Peru arise from interconnected structural, institutional, and experiential barriers. Interventions targeting early symptom recognition, diagnostic capacity, referral pathways, and caregiver support are essential to reduce delays and improve equity in pediatric neuro-oncology care. Integration of quantitative and qualitative findings demonstrated that diagnostic and referral delays resulted from the interaction between healthcare system constraints and caregiver experiences, with distinct patterns according to geographic location.

OBJECTIVES:This study sought to explore decision making among caregivers of children with cancer in Pakistan, one of the largest lower middle-income countries in the world. DESIGN:Cross-sectional survey study SETTING: This study was conducted in Pakistan at Indus Hospital and Health Network in Karachi and Children's Hospital of Lahore. Children's Hospital of Lahore is a public sector hospital, and Indus Hospital has a foundation-based funding structure. Both are larger tertiary care centers. Over 2,500 new patients are seen at these centers annually, this accounts for almost 50% of all children with cancer in Pakistan PARTICIPANTS: Eligible participants included bedside caregivers, defined as a parent or family member involved in communication with the medical team, of children with cancer (<19 years of age) diagnosed within the past 8 weeks, with plans to receive chemotherapy, radiation or surgery. PRIMARY AND SECONDARY OUTCOME MEASURES:Primary outcome measures included caregiver priorities and experiences related to communication including decision-making role, involvement of the paediatric patient and decisional regret. RESULTS:Participants included 200 caregivers of children<1-16 years old with a range of cancer diagnoses; 83% were parents and 60.5% were female. Most caregivers shared (46.5%) or completely deferred (43.5%) cancer-related decision making to other family members. Of the 10% of respondents primarily responsible for decisions related to their child's cancer, 70% were male. While 68% of caregivers preferred shared decision making with the child's oncologist, only 65% experienced decision making in the role they preferred. Caregivers expressed a range of preferences regarding child involvement; however, 70% said nobody talked to their child about cancer. Few caregivers (17%) endorsed regret. CONCLUSIONS:Findings from this study highlight the importance of exploring preferences for decision making and empowering bedside caregivers while respecting cultural norms. In the Pakistani context, it may be specifically important to consider gender roles and the inclusion of extended family members. Future work should investigate paediatric patient involvement in diverse settings.

Summary: Background: Stigma experienced by individuals with disease is a barrier to health-seeking behaviors and outcomes. Our aim was to systematically review how stigma has been defined and measured and identify gaps in approaches to measurement and intervention. Methods: A systematic review was conducted following PRISMA guidelines. Databases were searched for stigma measurement in health through July 2024. 8123 citations were screened. Data on definitions, measurement, psychometrics, and interventions were extracted. PROSPERO: CRD42023433176. Findings: We identified 2267 studies (2605 tools) from 101 countries. 396 (15.2%) tools focused on development and 2369 (91.0%) applied tools. Most tools assessed adults (77.2%). Over 750 stigma tools were identified; many tools were adapted (n = 674) or shortened (n = 446). 117 studies reported effective interventions, primarily in adults. Key gaps included lack of consensus on definitions, limited pediatric-focused research, and insufficient attention to structural drivers of stigma. Interpretation: This review calls for standardized, context-sensitive stigma measurement and interventions applicable across conditions and settings. Addressing these gaps is crucial to reducing the global burden of stigma and enhancing health outcomes. Future research should focus on unified conceptual approaches and definitions to develop globally adaptable tools and scalable interventions that address both the experiences and structural drivers of stigma. Funding: Components for the programs involved in this work have been funded by St. Jude Children's Research Hospital, the National Cancer Institute (3POCA021765-44S2), the American Lebanese Syrian Associated Charities, and Siteman Cancer Center. The views in this paper are those of the authors and don’t necessarily reflect the funding agencies. The funding agencies were not involved in the writing or submitting of this work.

Background:The St. Jude Global Academy's Neuro-Oncology Training Seminar (NOTS) is a course in pediatric neuro-oncology (PNO), which was created for physicians from low- and middle-income countries. This study reports on the impact of the NOTS. Methods:The NOTS has been imparted in 2018, 2022, and 2023. Data on course participants were prospectively collected, and a survey evaluating course impact was completed by graduates and analyzed quantitatively and qualitatively. Results:Overall, participants from 38 institutions from 29 countries have participated in the NOTS. Furthermore, 205 individuals participated, including 70 pediatric oncologists, 45 neurosurgeons, 22 radiation oncologists, 21 pathologists, 17 radiologists, 7 pediatric neurologists, and 23 other specialties. Survey responses from 76 participants were collected. Of the 47% of respondents who did not have multidisciplinary tumor boards (MDTB) before the NOTS, 55% of those institutions created them influenced by their participation in the NOTS. In addition, 79% of respondents stated that multidisciplinary communication improved after the course. Qualitative analysis identified seven key themes related to the impact of the NOTS course and elucidated the impact of the NOTS on multidisciplinary engagement, institutional practice, and patient care. More specifically, respondents described improvements to interpersonal working, co-ordination of care, clinical management, and decision-making. The NOTS participants have continued to be engaged through the Global Alliance in Pediatric Neuro-Oncology (GAPNO). Conclusions:A multidisciplinary course on the care of pediatric CNS tumor for resource-limited settings has increased PNO expertise and improved multidisciplinary care. It has galvanized a community of practice to further expand capacity building.

Background:Stigma experienced by individuals with disease is a barrier to health-seeking behaviors and outcomes. Our aim was to systematically review how stigma has been defined and measured and identify gaps in approaches to measurement and intervention. Methods:A systematic review was conducted following PRISMA guidelines. Databases were searched for stigma measurement in health through July 2024. 8123 citations were screened. Data on definitions, measurement, psychometrics, and interventions were extracted. PROSPERO: CRD42023433176. Findings:We identified 2267 studies (2605 tools) from 101 countries. 396 (15.2%) tools focused on development and 2369 (91.0%) applied tools. Most tools assessed adults (77.2%). Over 750 stigma tools were identified; many tools were adapted (n = 674) or shortened (n = 446). 117 studies reported effective interventions, primarily in adults. Key gaps included lack of consensus on definitions, limited pediatric-focused research, and insufficient attention to structural drivers of stigma. Interpretation:This review calls for standardized, context-sensitive stigma measurement and interventions applicable across conditions and settings. Addressing these gaps is crucial to reducing the global burden of stigma and enhancing health outcomes. Future research should focus on unified conceptual approaches and definitions to develop globally adaptable tools and scalable interventions that address both the experiences and structural drivers of stigma. Funding:Components for the programs involved in this work have been funded by St. Jude Children's Research Hospital, the National Cancer Institute (3POCA021765-44S2), the American Lebanese Syrian Associated Charities, and Siteman Cancer Center. The views in this paper are those of the authors and don't necessarily reflect the funding agencies. The funding agencies were not involved in the writing or submitting of this work.