Generalizable EHR-R-REDCap pipeline for a national multi-institutional rare tumor patient registry

Objective To develop a clinical informatics pipeline designed to capture large-scale structured Electronic Health Record (EHR) data for a national patient registry. Materials and Methods The EHR-R-REDCap pipeline is implemented using R statistical software to remap and import structured EHR data into the Research Electronic Data Capture (REDCap)-based multi-institutional Merkel Cell Carcinoma (MCC) Patient Registry using an adaptable data dictionary. Results Clinical laboratory data were extracted from EPIC Clarity across several participating institutions. Laboratory values (Labs) were transformed, remapped, and imported into the MCC registry using the EHR labs abstraction (eLAB) pipeline. Forty-nine clinical tests encompassing 482 450 results were imported into the registry for 1109 enrolled MCC patients. Data-quality assessment revealed highly accurate, valid labs. Univariate modeling was performed for labs at baseline on overall survival (N = 176) using this clinical informatics pipeline. Conclusion We demonstrate feasibility of the facile eLAB workflow. EHR data are successfully transformed and bulk-loaded/imported into a REDCap-based national registry to execute real-world data analysis and interoperability.

Primary spinal dorsal extramedullary germ cell tumor: A rare case report and literature review

Background: Primary spinal extramedullary germ cell tumor are very rare. Germ cell tumor are similar histologically to germ cells of genital organs and may arise rarely from central and peripheral nervous system. Case Description: We report a case of 20-year-old male who presented with progressive lower extremity weakness, spasticity, and numbness of legs. Patient was evaluated with magnetic resonance imaging dorsal spine which revealed extramedullary mass in dorsal (D2-D3) level with severe cord compression. Tumor was found to be extramedullary with histopathology consistent with germ cell tumor. Patient was given radiotherapy and chemotherapy postoperatively. Conclusion: Primary spinal extramedullary germ cell tumors are very rare and are very sensitive to radiation and chemotherapy. Various management and treatment protocols are available across institutions in the world. We recommend adequate decompression of cord with biopsy followed by local radiation and chemotherapy. As these are rare tumors, presenting with significant neurological deficits should always be kept in the differential diagnosis.

Telemedicine for neurosurgery consultations at a Pituitary Center of Excellence: Patient preference and willingness to proceed with surgery

Objective The purpose of this study was to evaluate pituitary tumor patient satisfaction with telemedicine, patient preference for telemedicine, potential socioeconomic benefit of telemedicine, and patients’ willingness to proceed with surgery based on a telemedicine visit alone. Methods 134 patients who had pituitary surgery and a telemedicine visit during the COVID-19 pandemic (4/23/20-3/4/21) were called to participate in a 13-part questionnaire. Chi-square, ANOVA, and Wilcoxon Rank Sum were used to determine significance. Result Of 134 patients contacted, 90 responded (67%). 95% were “satisfied” or “very satisfied” with their telemedicine visit, with 62% stating their visit was “the same” or “better” than previous in-person appointments. 82% of patients rated their telemedicine visit as “easy” or “very easy.” On average, patients saved 150 minutes by using telemedicine compared to patient reported in-person visit times. 77% of patients reported the need to take off work for in-person visits, compared to just 12% when using telemedicine. 49% of patients preferred in-person visits, 34% preferred telemedicine, and 17% had no preference. 50% of patients said they would feel comfortable proceeding with surgery based on a telemedicine visit alone. Patients with both initial evaluation and follow-up conducted via telemedicine were more likely to feel comfortable proceeding with surgery based on a telemedicine visit alone compared to patients who had only follow-up telemedicine visits (p=0.051). Conclusion Many pituitary patients patients are satisfied with telemedicine visits and feel comfortable proceeding with surgery based on a telemedicine visit alone. Telemedicine is an important adjunct to increase access to care.

COT-29 The Japan Brain Tumor Alliance: Achievements in 2020–2021: highlights for neuro-oncologists and healthcare professionals

Brain tumors are a major shock at diagnosis for patients and their families, and the journey is hectic, impacted in various and complex ways, including acute and chronic episodes. The Japan Brain Tumor Alliance is a non-profit organisation, established in 2006 to support patients and their families. As our key activity, JBTA offers nation-wide patient support through patient-gathering meetings with and without health care professionals to openly share needs, issues and concerns, partly summarized and shared in the scientific field (Gatellier, 2021, OT Journal, vol 55 no.3, 257–259; Gatellier, 2021, MASCC Annual Meeting). JBTA actively collaborates with the International Brain Tumor Alliance, with recent outcome of an international survey featuring the brain-tumor patient and caregiver experience during COVID-19 pandemic (Voisin et al., 2020, Neuro-oncology advances, 2(1), vdaa104). As part of collaboration with healthcare professionals in 2020–21, JBTA achievements include the review of clinical guidelines (as part of Patient and Public Involvement activity), information-sharing events with the Japan Clinical Oncology Group and the seminar with a group including occupational therapists. In addition, to highlight patients’ needs and priorities to the neuro-oncology community, since March 2020, JBTA shares the Japanese translation of the monthly IBTA e-newsletter broadcasting the latest and most relevant scientific, community information and brain tumor-related events around the world to healthcare professionals and brain tumor patients and families in Japan. These enlightening events place JBTA in an ideal position to lead research in the direction most meaningful to brain tumor patients.

Risk Factors in Cancer Patients

Numerous studies in recent years have proven that the oncological process is an independent risk factor for thrombosis. For a long period of time and at the moment, research is continuing on the pathogenesis of a prothrombotic state in cancer patients. It was shown that the degree of risk is influenced by such indicators as the histological type of tumor, the stage of development of the disease, surgery, duration and type of anesthesia, chemotherapy, hormonal therapy, age, the presence of central venous catheters, immobilization, thrombophilia, history of thrombosis, infections. Thrombosis in cancer patients is triggered by thrombogenic factors associated with the tumor, patient-associated factors and environmental factors. The tumor cell affects the balance of hemostasis by releasing procoagulant substances, profibrinolytic, proproteolytic and proaggregant activity, expression of adhesion molecules, secretion of proinflammatory and proangiogenic cytokines; new participants in the process have also been identified. Studies have confirmed the fact that inflammation and thrombosis are inextricably linked with each other and play an important role in the progression of the disease and metastasis. All this opens up new horizons for the development of modern innovative strategies for treating cancer patients and increasing survival.

INNV-34. NEURO NARRATIVES: AN AUTOETHNOGRAPHIC ACCOUNT OF EXPERIENCING RESILIENCE WITH A BRAIN TUMOR

The current research uses autoethnography as a method to share my experience as a brain tumor patient. In this piece, I reference poems from the day of my diagnosis through my surgery, recovery, and following treatment to demonstrate the thematic factors that allowed me to cope and experience positive emotions as an oncology patient. Results included the factors of trust in medical care, utilizing social support, finding meaning and purpose, and self-love and gratitude. The implications of these factors in relation to resilience structures and discourses to better serve other oncology and chronic illness patients are discussed.

Multi-joint steroid-induced avascular necrosis in a malignant brain tumor patient

Avascular necrosis (AVN) is a rare but serious adverse event associated with the use of corticosteroids for long durations or at high doses. This case report describes a 47-year-old female patient with low-grade astrocytoma who was initiated on low-dose dexamethasone for symptom management. The patient developed joint pain 1 year after steroid exposure, then was found to have AVN of the hip followed by multiple other joints. This case report highlights the extent to which AVN can occur in patients with brain tumors following a short course of low-dose corticosteroids. Careful evaluation of and monitoring for the development of AVN should occur frequently in patients with brain tumors given the frequent use of corticosteroids for symptom management in this population.