bluuebunny/crossref_metadata_2025_split huggingface dataset:
QOL-34. POST-TRAUMATIC GROWTH AND COPING STRATEGIES AMONG ADOLESCENTS AND YOUNG ADULTS SURVIVORS OF PEDIATRIC BRAIN TUMORS
Authors: De Giuseppe Sara , Milanaccio Claudia , Verrico Antonio , Piccolo Gianluca , Molteni Marta , Robotti Sabrina , Venturino Cristina , Garrè Maria Luisa , Profio Sonia Di 
Published: June 2024

Abstract

BACKGROUND
Pediatric brain tumor survivors (PBTS) often report late psychosocial effects following the disease and the treatments. Recent studies have shown that PBTS can experience growth in their personal and interpersonal dimensions and develop coping strategies that allow them to deal with the stress caused by cancer diagnosis and subsequent therapies. This study aimed to describe post-traumatic growth (PTG) experiences and coping strategies among adolescents and young adults (AYA) survivors of pediatric brain tumors.

METHODS
AYA survivors were assessed using Post-Traumatic Growth Inventory (PTGI) and Coping Inventory for Stressful Situations (CISS) questionnaires. They received evaluation at a median age of 20.2 years (range 13.6-28.7), with a median of 92 months from diagnosis.

RESULTS
Among 22 AYA survivors (M =14; F=8), the diagnosed tumor types were: germ cell tumor (10/22), low-grade glioma (4/22), embryonal tumor (3/22), high-grade glioma (2/22), craniopharyngioma (2/22), and mesenchymal tumor of the meninges (1/22).The domains of PTG in which positive changes were most frequently reported were Personal Strength (25%), Appreciation for Life (25%), and New Possibilities (23%). The less impacted domain was Spiritual Growth (9%). As regards the most adopted coping style, 38% showed higher values in the Distraction scale, 31% in the Task-Oriented scale, 15% in the Avoidance scale, and 15% in the Social Diversion scale.

CONCLUSIONS
PTG and coping are important indicators of psychosocial adaptation to difficult or stressful events. To develop specific interventions that enhance PTG, it is essential to understand which factors influence growth in PBTS. Our preliminary data show that all AYA survivors report PTG after treatments, at least in some domains. Further analysis is needed to identify which coping styles may influence the development of PTG.
QOL-37. THE CREATION OF A PLAY PREPARATION CLINIC FOR CHILDREN WITH CENTRAL NERVOUS SYSTEM TUMOURS TO REGAIN CONTROL ONCE MORE
Authors: Ryles * J , Ternent * L , Arif T , Halliday G , Hill R M , Bailey S 
Published: June 2024

Abstract
Targeted therapies are becoming more readily available for children with Central Nervous System (CNS) tumours, not only for early phase but also late phase trials. With this knowledge, we have created a play preparation clinic whereby all children with a CNS tumour diagnosis are invited to attend. Initially the play preparation clinic was solely a programme to train children to take tablets using a technique created at The Great North Children’s Hospital called ‘Kidzmeds’. On average children are successful in achieving the ‘Kidzmeds’ technique within ten minutes so we were able to expand the programme and incorporate two other areas of play preparation. Firstly, we have been able to include play preparation for children undergoing procedures without sedation or general anaesthesia such as MRI scans and lumbar punctures. Secondly, we have been able to use play preparation to teach children how to achieve cannulation or blood taking using a specific technique we have called the ‘GNCH way’. Our aim is that children leave our hospital having a positive experience and regain control and choice in how procedures take place, feeling they have ownership of their bodies. There is an added incentive of cost saving for our hospital, for example converting medication from liquid to tablet form. Forty-eight children have took part in the clinic so far. Every child has been able to achieve two of the play preparation techniques we offer and eighty-three percent of children have been successful in achieving all three. The youngest child in achieving all three play preparation techniques has been four years old. All forty-eight children continue to be successful in their achievements. Within our service, the feedback from children and families have been overwhelmingly positive and our hope is that other hospitals across the world can benefit from our experience.
QOL-39. FATIGUE AS A RISK FACTOR FOR REDUCED SOCIAL CONNECTEDNESS IN PEDIATRIC BRAIN TUMOR SURVIVORS
Authors: Fantozzi Peter , Fisher Michael J , Herrington John D , Li Yimei , McCormack Shana E , Parish-Morris Julia , Hocking Matthew C 
Published: June 2024

Abstract

BACKGROUND
Pediatric brain tumor survivors (PBTS) experience reduced social connectedness, including fewer friendships, less social acceptance, and greater isolation. Identifying modifiable factors contributing to social issues would yield treatment opportunities. Fatigue is common among PBTS and may relate to social challenges. This study evaluated fatigue among PBTS and its associations with various indices of social connectedness.

METHODS
Survivors (N = 34) of three types of brain tumors—medulloblastoma (N = 11), pilocytic astrocytoma (N = 15), and craniopharyngioma (N = 8)—completed self-reported measures of fatigue and social connectedness. Laboratory studies assessed thyroid function and growth hormone status. Caregivers completed measures of social functioning. Descriptive statistics summarized fatigue and endorsement of fatigue items. ANOVAs, t-tests, and Pearson correlations evaluated fatigue according to various medical factors, and Pearson correlations evaluated associations between self-reported fatigue and indices of social connectedness.

RESULTS
Over 20% of survivors reported elevated fatigue, with 53% and 35% indicating fatigue interfering with attention and socialization, respectively. We did not detect associations between self-reported fatigue and diagnosis, current age or age at diagnosis, time since end of treatment, or history of chemotherapy or cranial radiation therapy. We did not detect an association between BMI Z-score and collected hormones. Mean T scores on the self-reported peer relationships measure were below the reference mean (M = 45.8, SD = 11.9), with 22% of survivors endorsing concerns. Higher self-reported fatigue was significantly correlated with poorer self-reported peer relationships (r = -.62, p &lt; 0.001) and more parent-reported social impairments (r =.61, p &lt; 0.001).

CONCLUSIONS
Fatigue is common among PBTS and may interfere with peer relationships. Clinicians should screen for fatigue as a risk factor for reduced social connectedness. Further research is needed to identify predictors of fatigue and social difficulties and determine temporal associations between fatigue and social connectedness.
QOL-50. THE ROLE OF TUMOR SIZE IN COGNITIVE FUNCTIONING AMONG SURVIVORS TREATED FOR MEDULLOBLASTOMA
Authors: Raghubar Kimberly P , Christopher Krystal , Kim Se-Kang , Mash Lisa , Stancel Heather , Parsons Kelley , Feuerbach Natasha , Rizvi Maheen , Paulino Arnold , Grosshans David , Okcu M Fatih , Kahalley Lisa S , Chintagumpala Murali 
Published: June 2024

Abstract

BACKGROUND
Medical and treatment variables, including presence of post-operative cerebellar mutism syndrome (CMS), shunt placement, craniospinal radiation, and total radiotherapy (RT) dose, have been evaluated as potential risk factors for adverse cognitive effects among pediatric patients diagnosed and treated for medulloblastoma. Larger brain tumor size is associated with increased risk of medical complications, but cognitive risk of larger tumor size remains unknown.

METHODS
Cognitive scores were examined for 40 participants diagnosed and treated for medulloblastoma. The age-appropriate Wechsler Intelligence Scale was administered at the start of RT and up to 10 years post-RT (M=4.96, SD=3.78). A total of 162 evaluations were examined across participants. Linear mixed models examined change in Wechsler Index scores over time since RT based on tumor size, which was dichotomized at the median diameter (small ≤4.6cm versus large &gt;4.6cm), covarying for maternal education, total RT dose, and presence of CMS.

RESULTS
Patients (72.5% male) were diagnosed with medulloblastoma and began RT at a mean age of 8.89 years. Groups did not differ on demographic or medical variables with the exception of presence/absence of CMS, with a higher proportion of patients diagnosed with CMS having large-size tumors (40%) versus small-size tumors (5%). Tumor size did not predict change in IQ, working memory, or processing speed performance over time since RT after accounting for covariates. CMS was associated with significant decline in processing speed (p&lt;.001) and IQ over time (p&lt;.05); RT dose was associated with significant working memory and IQ decline (both p&lt;.05); and maternal education was associated with decline in processing speed, working memory, and IQ (all p&lt;.05).

CONCLUSIONS
While tumor size may be associated with treatment intensity and other medical risk factors, CMS and RT dose significantly increase cognitive risk, independent of tumor size. Lower socioeconomic status also increases cognitive risk post-RT, which may illuminate pathways for prevention and intervention efforts.
QOL-53. EXPLORING HEADACHES IN PEDIATRIC NEURO-ONCOLOGY PATIENTS: A SINGLE INSTITUTION RETROSPECTIVE CHART REVIEW
Authors: DeMarsh Samantha J , Ackley Elizabeth R , Staley Alyse , Dorris Kathleen M 
Published: June 2024

Abstract

BACKGROUND
Despite the high prevalence of headaches in pediatric patients with brain tumors, very little research has been done to characterize their traits and to assess current management practices. Effective and efficient treatment of these headaches is critical to the optimization of brain tumor survivors’ quality of life. Foundational knowledge of any clinical associations likely would be beneficial to develop rational management strategies.

METHODS
A retrospective single-institution chart review of pediatric patients seen in the Children’s Hospital Colorado (CHCO) Neuro-oncology clinic from 1/1/22-12/31/22 is underway. Information is being collected via manual chart review including basic demographic information, oncologic diagnosis and tumor location, surgical interventions, and tumor-directed treatments. Headache characteristics, including timing of onset, associated symptoms, severity and frequency, referral to CHCO Neurology Headache Clinic and any headache therapies attempted will be sought. Additional information will include the number of emergency department visits and unplanned MRIs obtained as part of headache management.

RESULTS
384 patients (53% male; median age 12 years, range 2-24 years) received care in the CHCO Neuro-oncology clinic in 2022. The majority of these patients were Caucasian/Non-Hispanic (61.7%), followed by Caucasian/Hispanic (13.8%) and African American/Non-Hispanic (4.2%). In this cohort, the preferred language for 93% was English and for 6% was Spanish. The majority (55%) of patients had a low-grade glioma/ glioneuronal tumor as their oncologic diagnosis. Patients with referrals to CHCO Headache clinic made up 13% of this cohort. Data collection and analysis are ongoing.

CONCLUSIONS
This data set will help to characterize the prevalence and features of headaches in pediatric patients with CNS tumors. This information will serve as the foundation for planned prospective studies that will collect more comprehensive and consistent data related to headaches in the pediatric neuro-oncology population and to formalize processes that will identify appropriate patients for referral to specialized headache providers.
SURG-05. INTRA-ARTERIAL CHEMOTHERAPY FOR NEWLY DIAGNOSED, RESIDUAL, OR RECURRENT ATYPICAL CHOROID PLEXUS PAPILLOMA AND CHOROID PLEXUS CARCINOMA PRIOR TO SECOND-LOOK SURGERY
Authors: Larsen Alexandra M Giantini , Rangaraj Rashi , Sanders Colleen , Garton Andrew , Gobin Y Pierre , Knopman Jared , Tsiouris Apostolos John , Pisapia David , Souweidane Mark 
Published: June 2024

Abstract

BACKGROUND
Atypical choroid plexus papilloma (ACPP) and choroid plexus carcinoma (CPC) are rare malignant tumors of the central nervous system. Complete resection, the most important prognostic variable for long-term survival, is often limited by tumor vascularity and voluminous size in children. While systemic chemotherapy is known to reduce tumor volume and intra-operative blood loss, children often experience dose-limiting side effects. We hypothesize the use of intra-arterial (IA) chemotherapy for newly diagnosed, recurrent, or residual CPC/ACPP would increase likelihood of achieving complete resection in a safer manner.

OBJECTIVE
To assess the safety, feasibility, and effect of pre-operative IA chemotherapy for CPC/ACPP.

METHOD
The patient was treated according to phase I clinical trial protocol (NCT04994977) which consists of a single IA chemotherapy administration of melphalan, topotecan, and carboplatin followed by MRI-based response assessment to determine eligibility for second-look surgery. Primary endpoints are serious adverse events, and secondary endpoints include angiographic procedural success, tumor volume reduction on MRI, extent of resection and caclulated blood loss (CBL), and pathologic correlates of vascularity and tumor viability.

RESULT
7-year-old male with Li-Fraumeni syndrome was enrolled for residual CPC (4.8 x 4.6 cm) after three prior resection attempts were limited by significant blood loss. Pre-operative IA chemotherapy was delivered to two targets without complication: the right posterolateral and anterior choroidal arteries. Five weeks later, MRI confirmed tumor volume reduction of 6.3%. On angiographic evaluation for administration of pre-surgical embolization, a significant reduction in angiographic hypervascularity was found, and liquid embolic embolization was not pursued. Craniotomy resulted in gross total resection without transfusion requirement and minimal CBL. Pathology demonstrated reduced proliferative index (Ki67 4% versus 10% in prior tissue).

CONCLUSION
Early phase results indicate pre-operative IA chemotherapy for residual CPC/ACPP may serve as safer bridge to second look surgery by decreasing tumor volume and vascularity.
NURS-11. NEURO-ONCOLOGIC EMERGENCY MANAGEMENT
Authors: Fitzgerald Caroline , Phelan Alison 
Published: June 2024

Abstract

BACKGROUND
Due to disease location, neuro-oncology patients experience emergencies that are infrequently encountered in general oncology and require unique interventions. Paramount among these emergencies is vasogenic cerebral edema (CE). Urgent and accurate interventions are needed to decrease associated morbidity and mortality. In an educational institution, access to knowledge of next steps is crucial. This prompted further inquiry of best practice into recognition of increasing intracranial pressure (ICP) and management of cerebral edema using a literature review and reflection on institutional experience.

METHODS
A literature review was conducted using pubmed to identify articles through January 2014. The Key words used in the search included “neuro-ongologic emergencies” “brain herniation management” “cerebral edema.

RESULTS
The searched yielded 3237 results. Of these, 3236 were excluded. Ten full text articles were relevant and included in the review. In combination with the literature and institutional experience of neuro-oncological emergencies, interventions and outcomes were evaluated to provide recommendations for treatment in the event of an emergency.

CONCLUSION
CE is not an uncommon finding with malignant brain tumors given disrupted blood brain barrier. This subsequently increases ICP and left unmanaged, can lead to brain herniation. Signs and symptoms can vary depending on tumor location and extent of edema. Most common exam findings to be aware of include headache, nausea, vomiting, altered pupil exam, abnormal eye movements, and altered consciousness. Ultimately surgical intervention may be the definitive treatment, non-surgical management is important. Literature review supported the use of both high dose dexamethasone and hyperosmolar solutions are temporizing measures to decrease CE. Additional measures such as positioning, treatment of pain or fever, are also recommended. Prompt recognition and intervention of CE are crucial to improved patient outcomes. An educational poster with recommendations for best practice when encountering neuro-oncological emergencies will be created. Dissemination of findings will be done at local, national and international levels.
OTHR-02. ONE-YEAR FOLLOW-UP OF THE NEW ERN PAEDCAN CNS TUMOR BOARD: LESSONS LEARNT AND FUTURE PROSPECTS
Authors: Sönksen Marthe , Bison Brigitte , Bußenius Lisa , Rascon Jelena , Obrecht-Sturm Denise , Pizer Barry , Scheinemann Katrin , Schalling Martin , Ladenstein Ruth , Mynarek Martin , Rutkowski Stefan 
Published: June 2024

Abstract

BACKGROUND
European Reference Networks (ERN) are collaborative networks connecting healthcare professionals across Europe. A virtual tumor board for pediatric patients with central nervous system (CNS) tumors was established within the ERN for pediatric oncology (ERN PaedCan) in September 2022. We report the feasibility, the implementation of recommendations and satisfaction of the participants.

METHODS
A web-based questionnaire was distributed to physicians presenting cases between November 2022 and November 2023. Questions addressed the implementation of recommendations, satisfaction and basic information about the local institution. Basic data of the presented cases were taken from anonymized tumor board protocols.

RESULTS
In the first year, 19 patients from 11 institutions located in nine European countries were discussed in 21 tumor boards. Median age at diagnosis was 10 (1-17) years. Demonstration of MRI findings by the German national reference center for neuroradiology was conducted in 19/21 conferences. 18/21 questionnaires (86%) were answered by physicians from eight countries. Main reason to request the discussion were questions about therapy (78%, n=14/18). Inquiring institutions treated a median of 10 (5-150) neuro-oncological pediatric patients per year. All hospitals conducted own institutional tumor boards. National central review was available in 3/8 countries (38%). Recommendations were followed, at least partly, in all cases except for one patient experiencing unexpected clinical deterioration. Recommendations were deemed helpful in 89%. All participants would recommend the tumor board to colleagues. Technical issues regarding data provision were reported as the main obstacle in 50 %.

CONCLUSIONS
A European virtual tumor board for pediatric patients with CNS tumors is feasible and perceived as useful by the participating institutions. Recommendations were followed frequently. Optimization of privacy-compliant data exchange is crucial for continuance of the format. This project has been supported by ERN PaedCan, which is funded by the European Union within the EU4Health Program 2021-2027. Funded by EU-grant 101085543.
OTHR-06. A NEW INTERNATIONAL, MULTIDISCIPLINARY ACCELERATOR PROGRAMME FOR NOVEL BRAIN TUMOUR THERAPIES
Authors: Aitken Charlotte , Huskens Nicky , Bushby Katie , Noble Karen , Hamerlik Petra , Kaye Edward , Kobayashi Dione , Matthew Ryan , McCall John , Nazarian Javad , Plummer Ruth , Rahman Ruman , Lopez Juanita , Nagaraju Kanneboyina 
Published: June 2024

Abstract

BACKGROUND
Developing a comprehensive translational programme for brain tumours involves navigating numerous challenges, including robustness of preclinical studies, safety, clinical trial design, regulatory issues, and commercialisation. Recognising this journey can be difficult, the Brain Tumour Research Novel Therapeutics Accelerator (BTR-NTA) was launched. The BTR-NTA is an accelerator programme that provides independent guidance to de-risk drug or device development through systematic evaluation. The international, multidisciplinary BTR-NTA Committee spans the entire therapeutic development pathway to avoid a siloed approach to therapeutic development. Thanks to Brain Tumour Research funding, the BTR-NTA is free for academics and available at nominal cost for industry.

METHODS
Researchers at any stage of therapeutic development are invited to apply to BTR-NTA, and, if accepted, their application proceeds as follows: 1. The Applicant completes an application form covering work to date and future plans under a confidentiality agreement that protects the Applicant’s intellectual property; 2. The Applicant’s therapeutic is reviewed by the BTR-NTA Committee 3. The Applicant and BTR-NTA Committee meet in-person to discuss the Applicant’s work; and 4. The Applicant receives a comprehensive report with feedback on strengths, identification of potential risks, and guidance on next steps. The BTR-NTA Committee dedicates half a day to reviewing the Applicant’s work in-person, and extensive time pre- and post-meeting.

RESULTS
Following the launch of BTR-NTA in 2023 and review of the first therapies, we will report on impact to date, early learnings, and how we hope to grow BTR-NTA to accelerate novel brain tumour therapies globally.

CONCLUSIONS
The ultimate goal of BTR-NTA is to enable researchers with a potential therapy for brain tumours to navigate the development journey and successfully reach the clinic in an efficient way. It is hoped this programme will strengthen international collaboration and support the development of novel therapies to improve outcomes for brain tumour patients.
OTHR-15. POSTMORTEM TISSUE BIOBANKING AND COLLABORATIVE EFFORTS: A SINGLE INSTITUTION REPORT
Authors: Peck Sydney N , Lebert Brittany , Hegert Julia , Wright Avery , Zapata Claudia , Pitts Blaine , Bonilla Ana Aguilar- , Smith Amy A 
Published: June 2024

Abstract

BACKGROUND
Post-mortem tissue donation holds significant value to researchers, clinicians and bereaved families however it is an underutilized tool. Initiatives in pediatric neuro-oncology allow new insights into tumors such as DIPG and is becoming more widespread. Barriers include treating physicians lack of knowledge, lack of resources, religious beliefs and more. Postmortem tissue gives insight into the evolving biology of cancer and failed treatments. Postmortem tissue donation offers some understanding to families and empower them to help others. Surgical tissue collection used for diagnosis, leaves limited amounts for research.

METHODS
Since 2012, we have contributed to pediatric cancer research by offering postmortem donation to 48 patients. We have consented and facilitated 35 autopsies. In 2020, Arnold Palmer Hospital for Children became a lead institution for the COG’s Project:EveryChild. In 2021, we became a Center of Excellence for Gift From A Child. Our local Translational Protocol, IRB-approved, allowing us to collect and store our surgical and postmortem samples. To date, we have collected over 839 postmortem samples from 35 patients. In our Translational Laboratory, we have access to 207 postmortem samples from 13 patients. Through collaborative research initiatives, we have successfully sent over 368 samples from 11 patients and 14 parents to GFAC. Through Project:EveryChild we have shared 218 samples from 7 patients.

RESULTS
To explore the quality of postmortem tissues, we tested the integrity of our samples through DNA and RNA sequencing. The DNA quality is excellent across specimens and equivalent to surgical specimens however the RNA quality from autopsy specimens has degraded 7.5% RINe factor &gt; 8 (excellent) and 38% RINe factor &gt; 6 (mildly degraded) compared to surgical specimens, 85% with RINe factor &gt; 8, 14.3% RINe factor &gt; 6.

CONCLUSION
The platform of postmortem tissue donation can lead to further advancements in understanding the evolution and resistance of cancer.