Browsing by Author "Rajagopal, R"

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    An international multicenter survey reveals health care providers’ knowledge gap in childhood central nervous system tumors
    (Springer Science and Business Media Deutschland GmbH, 2023) Rajagopal, R; Moreira, DC; Faughnan, L; Wang, H; Naqvi, S; Krull, L; Vasquez, L; Diaz-Coronado, R; Terao, M; Devidas, M; Qaddoumi, I
    Childhood central nervous system (CNS) tumors have longer delays in diagnosis than do other pediatric malignancies because health care providers (HCPs) lack awareness about clinical presentation of these tumors. To evaluate the knowledge gap among HCPs, we conducted a global cross-sectional survey. The survey consisted of a set of CNS tumor knowledge questions focused on symptoms, signs, and imaging indications. The survey was disseminated to HCPs via email (November 2018–March 2020). Participants had to complete a pre-test survey, attend an education seminar on CNS tumors, and complete a post-test survey. The knowledge gap was evaluated using pre-test and post-test scores. We received 889 pre-test and 392 post-test responses. Most respondents were from Asia (73.1% of pre-test responses; 87.5% of post-test responses). The median pre-test score was 40.0% (range: 13.1–92.9%). A high percentage of correct answers were given in post-test responses (median score: 77.1%, range: 14.9–98.2%). In the pre-test, 18.7% of participants accurately responded that Cushing’s triad was a less common symptom, and 15.0% recognized that children aged > 10 years are at risk of late diagnosis. Surprisingly, 21.9% falsely reported that patients with malignancy experienced the longest pre-diagnostic symptom interval, and 54.5% of respondents wrongly selected medulloblastoma as the most common CNS tumor. Overall, pediatricians demonstrated a greater knowledge gap on both surveys than did other specialties. Conclusion: Pre- and post-test surveys revealed significant knowledge gaps in childhood CNS tumors among HCPs. Thus, raising professional awareness on clinical presentations of CNS tumors through educational strategies is important to address this knowledge deficit.What is Known:• Diagnostic delay in childhood central nervous system (CNS) tumors continues to be a significant problem that negatively impacts the quality of life and treatment sequelae.• Lack of medical education on CNS tumors is a contributing factor to this problem.What is New:• Most health care providers do not realize that low-grade tumors are the most common neoplasm in children.• Health care providers fail to recognize that teenagers and adolescents are a vulnerable age group for diagnostic delays, with the longest pre-diagnostic symptom interval. © 2022, The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.
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    Publication
    Development of the pediatric neuro-oncology services assessment aid: An assessment tool for pediatric neuro-oncology service delivery capacity
    (Oxford University Press, 2024) Rajagopal, R; Coronado, RD; Hamid, SA; Martin, del, Campo, RN; Boop, F; Bag, A; Reséndiz, AEB; Vasudeva, Bhat, K; Campos, D; Chang, K; Cirt, R; Rahmartani, LD; Foo, JC; Hoveyan, J; Lucas, JT,, Jr; Ngcana, T; Ul, Ain, R; Omran, N; Osorio, DS; Qureshi, BM; Sabin, ND; Schandorf, E; Bankah, P; Dadzie, M-A; Gbadamos, H; Sharafeldin, H; Somathilaka, M; Yang, P; Jean-Jacques, YA; Zhang, A; Salman, Z; Gonzalez, M; Friedrich, P; Rodriguez-Galindo, C; Qaddoumi, I; Moreira, DC
    Background. To enhance the quality of care available for children with central nervous system (CNS) tumors across the world, a systematic evaluation of capacity is needed to identify gaps and prioritize interventions.To that end, we created the pediatric neuro-oncology (PNO) resource assessment aid (PANORAMA) tool. Methods. The development of PANORAMA encompassed 3 phases: operationalization, consensus building, and piloting. PANORAMA aimed to capture the elements of the PNO care continuum through domains with weighted assessments reflecting their importance. Responses were ordinally scored to reflect the level of satisfaction. PANORAMA was revised based on feedback at various phases to improve its relevance, usability, and clarity. Results. The operationalization phase identified 14 domains by using 252 questions.The consensus phase involved 15 experts (6 pediatric oncologists, 3 radiation oncologists, 2 neurosurgeons, 2 radiologists, and 2 pathologists). The consensus phase validated the identified domains, questions, and scoring methodology.The PANORAMA domains included national context, hospital infrastructure, organization and service integration, human resources, financing, laboratory, neurosurgery, diagnostic imaging, pathology, chemotherapy, radiotherapy, supportive care, and patient outcomes. PANORAMA was piloted at 13 institutions in 12 countries, representing diverse patient care contexts. Face validity was assessed by examining the correlation between the estimated score by respondents and calculated PANORAMA scores for each domain (r = 0.67, P < .0001). Conclusions. PANORAMA was developed through a systematic, collaborative approach, ensuring its relevance to evaluate core elements of PNO service capacity. Distribution of PANORAMA will enable quantitative service evaluations across institutions, facilitating benchmarking and the prioritization of interventions.