bluuebunny/crossref_metadata_2025_split huggingface dataset:
QOL-11. LATE MORBIDITY AND MORTALITY IN SURVIVORS OF CHILDHOOD EPENDYMOMA: A REPORT FROM THE CHILDHOOD CANCER SURVIVOR STUDY (CCSS)
Authors: Lange Katharine R , deBlank Peter , Xing Mengqi , Mirzaei Sedigheh , Srivastava Deo Kumar , Oeffinger Kevin , Neglia Joseph , Krull Kevin , Nathan Paul , Howell Rebecca , Ness Kirsten K , Turcotte Lucie , Leisenring Wendy , Armstrong Gregory T , Brinkman Tara , Bowers Daniel C , Okcu M Fatih 
Published: June 2024

Abstract

BACKGROUND
Between the 1970s and 1990s, therapy for childhood ependymoma evolved to include chemotherapy and focal rather than whole-brain radiation. The impact of these changes on health outcomes is unknown.

METHODS
404 five-year survivors of ependymoma (52.5% male, median 6 [range 0-20] years old at diagnosis, 22 [5-49] years from diagnosis) were evaluated for cumulative incidence of late mortality, subsequent neoplasms, and chronic health conditions (CHC). Outcomes were analyzed by diagnosis decade and brain radiation and chemotherapy exposures. Fine-Gray’s test compared cumulative incidence curves. Relative Risks (RRs) with 95% CIs estimated outcomes using multivariable piecewise exponential models.

RESULTS
Throughout the three decades whole brain radiation exposure decreased (32.7% to 2.3%) while focal brain radiation increased (16.4% to 59.2%), and chemotherapy use increased (23.6% to 47.9%). Fifteen-year all-cause late mortality (incidence, 95% CI) estimates were similar across treatment eras: 1970s (9.3%, 3.4-18.8%), 1980s (14.7%, 9.4-21.2%), 1990s (10.3%, 6.7-14.9%), (p=0.9). Mortality was higher with whole brain radiation (22.5%, 11.2-36.5%) compared to focal radiation (11.4%, 7.5-16.1%) or no brain radiation (3.5%, 0.9-9.1%), (p &lt;0.001). Mortality was also higher with chemotherapy (14.4%, 9.6-20.0%) compared to no chemotherapy (6.8%, 3.8-11.0%) (p=0.004). Differences in mortality were due to recurrence/progression of the primary cancer and health-related causes. Compared to no brain radiation, there were increased risks (RR, 95% CI) of any grade 3-4 CHCs for focal (2.6, 1.3-5.4) and whole brain radiation (3.5, 1.5-8.1) and &gt;1 Grade 3-4 CHCs for whole brain radiation (6.5, 1.3-31.6). There were no differences in CHCs or subsequent neoplasms by chemotherapy exposure.

CONCLUSIONS
Despite the treatment changes over the 1970s to 1990s, late morbidity and mortality in pediatric ependymoma remained unchanged. Whole and focal brain radiation were associated with increased risk of grade 3-4 CHCs compared to no radiation. Future therapies for childhood ependymoma should target reductions in late morbidity and mortality.
QOL-18. THE MODERATING ROLE OF SOCIAL VULNERABILITY IN THE RELATIONSHIP OF MATERNAL CAREGIVER CONDITION MANAGEMENT ABILITY AND TRANSITION READINESS OF THEIR YOUNG ADULT SURVIVORS OF PEDIATRIC BRAIN TUMORS
Authors: Anil Ashley , Hammer Shannon N , Hobbie Wendy L , Daly Brian P , Deatrick Janet A , Barakat Lamia P 
Published: June 2024

Abstract

BACKGROUND
The transition into adulthood is a particularly vulnerable time for young adult survivors of pediatric brain tumors (YAS) due to tumor/treatment-related late effects. Reduced supportive resource access and social determinants of health (SDH) can exacerbate challenges, impacting caregiver condition management ability (CMA) and YAS transition readiness. This study’s aim was to evaluate the relationship between YAS cognitive late effects, caregiver CMA, and YAS transition readiness, and the moderating role of SDH for YAS and caregivers with condition-focused family management.

METHODS
Fifty-three maternal caregivers (93% white, 98% non-Hispanic) of YAS (Mage=22) reporting low CMA completed the Transition Readiness Assessment Questionnaire (TRAQ; 5 subdomains) and rated YAS cognitive late effect severity. Medical experts scored 1) cognitive medical sequelae (0-6 scale), and 2) the Pediatric Neuro-Oncology Rating of Treatment Intensity. Social Vulnerability Index (SVI) measured cumulative SDH using 16 factors across US Census residential zip code data. Pearson correlations and moderated mediation analyses in Process Macro were used.

RESULTS
Caregiver ratings were associated with overall transition readiness (r=-.38, p=.005), cognitive medical sequelae (r=.53, p&lt;.001), and treatment intensity (r=.28, p=.039). Expert ratings were not related to transition readiness (ps&gt;.05); therefore, only caregiver ratings were used in moderated mediation models. For overall transition readiness, managing medications, appointment keeping, talking with providers, and managing daily activities, the direct effects of caregiver ratings (ps&gt;.05) and indexes of moderated mediation via CMA (ps&gt;.05) were not significant. For tracking health issues, the direct effect of caregiver ratings (p=.085) was not significant, but the index of moderated mediation was significant (95%CI=.026;.315).

CONCLUSIONS
Only caregiver cognitive late effect ratings were helpful in explaining YAS overall transition readiness. The role of social vulnerability in CMA and transition readiness warrants further exploration. Empirically based transition readiness YAS programs targeting access to resources for families with more social vulnerability are needed.
QOL-31. NEUROPSYCHOLOGICAL FUNCTIONING AND QUALITY OF LIFE IN INFANT AT/RT SURVIVORS: FOCUS ON FLUID INTELLIGENCE AND VISUAL PROCESSING
Authors: Traunwieser Thomas , Loos Elena , Ottensmeier Holger , Mynarek Martin , Bison Brigitte , Kandels Daniela , Rossius Anne , Lüttich Peggy , Baust Katja , Faulstich-Ritter Kristin , John Rainer , Kreisch Andrea , Landmann Judyta , Manteufel Eva , Nest Alexandra , Prüfe Jenny , Schubert Lisa , Stamm Walther , Timmermann Beate , Gerss Joachim , Rutkowski Stefan , Schlegel Paul-Gerhardt , Eyrich Matthias , Gnekow Astrid K , Frühwald Michael C 
Published: June 2024

Abstract

BACKGROUND
Understanding the long-term cognitive sequelae in infant brain tumor survivors remains incomplete, particularly regarding the impact of tumor type, multimodal treatment, and other patient-related factors. This retrospective analysis explores neuropsychological and quality of survival (QoS) outcomes in survivors of atypical teratoid/rhabdoid tumors (AT/RT) and extracranial malignant rhabdoid tumors of soft tissues (eMRT) and kidneys (RTK), all treated within the same framework. Neuropsychological data from children with AT/RT were compared to data from children with non-irradiated low-grade glioma (LGG).

METHODS
Patients (0 - 36 months at diagnosis) underwent various treatments, including radio-chemotherapy for AT/RT (n = 13) and eMRT/RTK (n = 7), chemotherapy only for LGG (n = 4) and eMRT/RTK (n = 1), or observation for LGG (n = 11). Neuropsychological evaluations were conducted at a median of 6.8 years (AT/RT), 6.6 years (eMRT/RTK), and 5.2 years (LGG) post-diagnosis.

RESULTS
Impairments were observed for all tumour types. Patients with AT/RT exhibited impairments in fluid intelligence (p =.041; d = 1.11) and visual processing (p =.001; d = 2.09) when compared to LGG-patients. Both groups demonstrated deficits in psychomotor speed and attention abilities (p &lt;.001–.019; d = 0.79–1.90). Diagnosis significantly predicted cognitive outcomes, whereas gender and age-related variables did not. QoS outcomes for all rhabdoid patients indicated lower scores in psychosocial functioning (p =.023; d = 0.78) and quality of life (p =.006; d = 0.79) compared to healthy controls.

CONCLUSIONS
Infant rhabdoid tumor survivors experience cognitive and quality-of-life sequelae. Patients with AT/RT are especially vulnerable to impairments in fluid intelligence and visual processing, while infant LGG-patients without radiotherapy demonstrated comparable deficits in psychomotor and attention abilities. Close monitoring of neuropsychological and quality of life outcomes is crucial for early onset and multimodal treatment.
QOL-33. CANCER WORRY AND PSYCHOPATHOLOGICAL SYMPTOMS IN ADOLESCENTS AND YOUNG ADULTS SURVIVORS OF PEDIATRIC BRAIN TUMORS
Authors: Profio Sonia Di , De Giuseppe Sara , Verrico Antonio , Piccolo Gianluca , Molteni Marta , Venturino Cristina , Garrè Maria Luisa , Milanaccio Claudia 
Published: June 2024

Abstract

BACKGROUND
Adolescent and young adult (AYA) survivors of pediatric brain tumors may experience cancer-related worries, defined as concerns about relapse and late effects of treatment. Late psychological effects include psychological distress, depression, immaturity, and poor development of social skills. Furthermore, pediatric brain tumor survivors (PBTS) are more vulnerable to developing long-term neurocognitive and psychosocial consequences compared both to the general population and survivors of other types of childhood cancer. The purpose of the study was to identify the presence of cancer worry and psychopathological symptoms in AYA survivors of pediatric brain tumors.

METHODS
AYA survivors were assessed using the Cancer Worry Scale and Child Behavior Checklist questionnaires. Neurocognitive evaluation was performed using the age-appropriate Wechsler Scale.

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). Survivors received the assessment at a median age of 20.2 years (range 13.6-28.7), with a median of 92 months after diagnosis. Cancer worry was reported in 50% of patients. The psychological evaluation showed clinical levels of internalizing problems in 17% and externalizing problems in 8%. Depressive and anxiety problems were reported in 25% of our cohort. Neurocognitive assessment demonstrated an average tIQ of 104.

CONCLUSIONS
As reported in the literature, cancer worry can influence the psychosocial adjustment process, alter self-image, and influence lifestyle decisions in PBTS. These concerns can affect their life prospects and their ability to successfully complete developmental tasks. Therefore, these issues must be early identified to prevent, through targeted psychosocial interventions, the onset of troubles in having romantic relationships, finishing school, entering the job market, and obtaining a good quality of life.
QOL-36. IMPACT OF RADIATION ON SYMPTOMS OF ANXIETY IN PEDIATRIC PATIENTS WITH BRAIN TUMORS
Authors: Lucas Bryony J , Stancel Heather H , Raghubar Kimberly P , Christopher Krystal K , Ibarrola Ana Sofia C , Grosshans David R , Paulino Arnold D , Okcu M Fatih , Chintagumpala Murali M , Brown Austin L , Scheurer Michael E , Kahalley Lisa S 
Published: June 2024

Abstract

BACKGROUND
Children and adolescents with brain tumors are at increased risk for anxiety compared to unaffected peers, but the impact of treatment on anxiety are unknown.

METHODS
We identified patients diagnosed with a brain tumor at Texas Children’s Hospital (2012-2019), excluding high-grade glioma. Anxiety was evaluated using the BASC-2, with T-scores ≥60 considered positive. Baseline assessment occurred within six months of start of treatment and were repeated annually. Chi squared tests of independence were performed.

RESULTS
Of 156 patients included, 92 received proton radiation therapy (RT) and 64 did not receive any RT. 52% were male, and patients were diagnosed at a median age of 10.4 years (range: 6-20) with a median follow-up of 4.2 years (range: 0-11.4). 42% of patients (n=66/156) screened positive for anxiety at least once during the follow-up period. Among those treated with RT, 15% screened positive for anxiety at baseline and the proportion significantly increased at 1-year (29%) and 2-years (34%) follow-up (p=0.016). For patients spared radiation, there was no statistically significant change over time (p=0.56), although the proportion positive for anxiety trended lower over time with 30% positive at baseline, 26% positive at 1-year and 20% positive at 2-years of follow-up. In the non-RT cohort, patients reported more anxiety symptoms at baseline than patients who did receive RT (p=0.029), but no significant differences were observed at 1-year (p=0.80) or 2-year follow-up (p=0.13).

CONCLUSIONS
Nearly half of pediatric brain tumor patients report anxiety during or in the years following treatment. We identified differences in the trajectory of anxiety symptoms based on RT, with declining levels of anxiety observed in the population not receiving RT and an increasing proportion of patients reporting anxiety in the years following RT. These findings may help guide the delivery of supportive services to populations most at-risk of anxiety.
QOL-47. FINANCIAL TOXICITY IN PEDIATRIC NEUROSURGICAL ONCOLOGY
Authors: Larsen Alexandra M Giantini , Brown Samantha , Reiner Anne , Hoffman Caitlin , Greenfield Jeffrey , Souweidane Mark , Newman W Christopher 
Published: June 2024

Abstract

BACKGROUND
Financial toxicity encompasses the negative impact of medical costs on patients. To our knowledge, financial toxicity in pediatric neurosurgical oncology remains unstudied.

METHODS
All pediatric neurosurgical cases from 2016 to 2020 performed at Memorial Sloan Kettering Cancer Center were included. Financial toxicity (FT) was defined as patients experiencing: bankruptcy, bills sent to collections, settlement, or timed payment plan, expression of financial concern to social work, or utilization of copay, financial, or social work philanthropy assistance programs. FT was assessed in the 2 years pre- and post- surgical intervention for all patients.

RESULTS
Two hundred and ninety-five surgical procedures across 203 patients were analyzed. The rate of FT in the two years prior to the first neurosurgical procedure was 17% (34/203). The most common toxicities were financial assistance program (47%), social work philanthropy (29%), and bills sent to collections (24%). The rate of FT for the subset of patients surviving at least 2 years after surgery was 34% (30/87) with the most common toxicities being financial assistance program (33%), collections (33%) and social work philanthropy (27%). The majority of patients who experienced FT had at least one commercial insurance policy (56% for the pre-surgical cohort, 70% for the post-surgical cohort). For all 203 patients, the 2-year cumulative incidence of FT following first neurosurgical procedure was 19% (CI:14%,25%) with those experiencing pre-operative toxicity having a significantly higher two-year cumulative incidence of FT at 62% (95%CI: [43%,76%], p&lt;0.001) following first neurosurgical procedure. Patients without FT prior to first procedure had a two-year cumulative incidence of FT of 11% (95%CI: [7%,16%], p&lt;0.001).

CONCLUSIONS
FT rates are substantial in the pediatric neurosurgical oncology population. Pre-operative FT influenced post-surgical FT. The most common toxicity was financial assistance program utilization. The majority of patients and families who experienced FT had at least one commercial insurance plan.
NURS-05. CATALYZING AND INFORMING THE DEVELOPMENT OF MORE COMPREHENSIVE AND ACCESSIBLE PROGRAMS FOR CAREGIVERS OF YOUNG ADULT SURVIVORS OF CHILDHOOD BRAIN TUMORS
Authors: Ramaswamy Nithya , Herchline Emily , Joseph Melanie , Hammer Shanon , Anil Ashley E , Hobbie Wendy , Minturn Jane E , Barakat Lamia P , Deatrick Janet A 
Published: June 2024

Abstract

BACKGROUND
The chronic and intensive care needs of young adult survivors of childhood brain tumors are most often addressed by their maternal caregivers with limited, specific psychosocial or other programs to reduce caregiving demands and enhance their family management. Using a social ecological perspective, the purpose of this study was to catalyze and inform the development of more comprehensive and accessible programs for caregivers of young adult survivors of childhood brain tumors.

METHODS
Semi-structured interviews were conducted with 21 maternal caregivers, 6 post baccalaureate students/professional coaches for a problem-solving intervention for maternal caregivers, and 16 neuro-oncology clinical experts using interview guides tailored to their roles and constructed based on the Consolidated Framework for Implementation Science. Qualitative. Interview data were analyzed using content analysis.

RESULTS
Barriers included: need for internet connected devices (microsystem level); lack of care matched to their identified needs (mesosystem); poor tracking of long-term survivors and lack of survivorship psychosocial services (macrosystem); and lack of supportive health care policies and funding mechanisms for individuals and organizations (exosystem). Facilitators included: web-based platform accessible to the individuals and population (microsystem); widespread acknowledgement regarding gaps in survivorship psychosocial care (mesosystem); partnerships with survivors of childhood brain tumors, caregivers, and organizations that treat them (macrosystem); and dissemination among childhood brain tumor treatment/survivorship programs, healthcare systems, and community organization and endorsement from them (exosystem).

CONCLUSIONS
Multilevel approaches that address barriers and facilitators for improving health equity for maternal caregivers of young adult survivors of childhood brain tumors incorporate the design and dissemination of accessible, web-based programs designed in partnership with survivors, caregivers, and organizations to build care matched to need, as well as organizational, political, and community advocacy.
NURS-09. FERTILITY PRESERVATION AND PALLIATIVE CARE: RECOGNIZING THE NURSING ROLE IN THE PROMPT IMPLEMENTATION OF SUPPORTIVE CARE INTERVENTIONS IN THE PEDIATRIC CENTRAL NERVOUS SYSTEM TUMOR PATIENT POPULATION
Authors: McHugh Michele , Waters Kaaren , Briamonte Courtney Baker , Higgins Micah , Hoffman Carly , Holtzclaw Susan , Meyer Ashley , Raber Shannon , Rangan Kasey , Schmus Cindy , Seidl Kenny , Strachan Marylynne , Yeh-Nayre Lanipua 
Published: June 2024

Abstract

BACKGROUND
Given the complexity of pediatric central nervous system (CNS) tumors, an interdisciplinary approach is necessary to incorporate supportive care interventions that complement oncologic treatment plans. However, early implementation of both palliative care and fertility preservation services presents challenges within the pediatric neuro-oncology population.

METHODS
An extensive literature review was conducted for articles published between 2013-2023 using PubMed, Google Scholar, and CINAHL databases. The articles focused on nurses’ roles in pediatric oncology, palliative care, fertility preservation, and barriers to supportive care. Furthermore, the review incorporated collective knowledge sharing among pediatric neuro-oncology nursing specialists. This joint initiative applied evidence-based practices to showcase the successful implementation of palliative care and fertility preservation services, broadening this project’s scope.

RESULTS
One prevalent theme that emerged highlighted the delay in supportive care referrals attributed to perceived obstacles by healthcare team members. The misconception that palliative care is solely for end-of-life situations or the assumption that families are not ready to acknowledge an incurable diagnosis causes delays in palliative care referrals. Fertility preservation in pediatric oncology encounters obstacles, including the urgency to commence treatment, determining optimal candidate criteria, and navigating discussions with younger patients. Nurses are uniquely positioned in their role to bridge gaps between oncologic treatment interventions and the incorporation of supportive care measures. Recognizing the supportive care needs of patients, nurses can educate families, advocate for early referrals, and coordinate integrative care. Advanced Practice Nurses (APNs) can offer clinical consultation, and order appropriate screening, testing, medications, and referrals.

CONCLUSION
Disseminating nursing education across pediatric oncology practices and institutions is essential for identifying perceived barriers and reforming the early supportive care intervention process. This collaborative and proactive approach is designed to optimize the overall care experience, with the goal of enhancing the delivery of supportive care for pediatric neuro-oncology patients.
NURS-12. NEURO-RADIOLOGY 101 FOR RNS AND APPS
Authors: Strachan Marylynne , Briamonte Courtney Baker , Higgins Micah , Holtzclaw Susan , McHugh Michele , Meyer Ashley , Raber Shannon , Rangan Kasey , Schmus Cindy , Seidl Kenny , Waters Kaaren , Yeh-Nayre Lanipua , Hoffman Carly 
Published: June 2024

Abstract

BACKGROUND
Magnetic Resonance Imaging (MRI) brain are the gold standard of diagnosing pediatric brain tumors. In pediatrics, MRI’s are often presented at new diagnosis or recurrence at tumor boards, which includes APP and RN’s in a multidisciplinary approach. By providing basic understanding of MRI imaging and sequencing, APP’s and RN’s will be able to participate and understand patient treatment discussions.

METHODS
During the presentation, we will review the 3 common planes used in MRIs: axial, coronal, and sagittal. We will then discuss the common MRI sequences, including T1, T2, FLAIR, DWI, and post-contrast imaging and discuss which common brain tumors and anatomy are best seen on said sequences.

RESULTS
NA.

CONCLUSIONS
By the end of this presentation, pediatric RNs and APPs will have the basic understanding of MRI images and feel more confident to participate in multidisciplinary tumor board discussions.
NURS-17. SHOULD EVERY CENTRE HAVE A TARGETED THERAPY CLINIC?
Authors: Ryles J , Arif T , Connor A , Halliday G , Hill R M , Leech S , Rennison R , Thornton T , Bailey S 
Published: June 2024

Abstract
There is increased use of targeted therapies for children with Central Nervous System (CNS) tumours both at presentation and at relapse. Eighteen months ago, a dedicated CNS targeted therapy clinic was set up at The Great North Children’s Hospital in Newcastle upon Tyne. Referrals are accepted from all major centres in the north of the UK. Within our monthly clinic, five targeted therapies have been used so far including Selumetinib and Tovorafenib with an average of eight children per clinic. General practitioners are asked to carry out all blood investigations forty-eight hours prior to clinic. This has been audited and initial analyses show we have successfully reduced the time children spend in hospital from four hours to one hour. Having blood results prior to clinic means treatment can be prescribed and dispensed promptly. Furthermore, obtaining bloods in the community has reduced the workload for our oncology day unit. The side effect profile of targeted therapies differ from those of standard chemotherapy and requires specific expertise from members of the multidisciplinary team. We are able to predict trends in symptoms and manage them successfully and efficiently. We have direct access to the ophthalmology and Neurofibromatosis team at each clinic. We offer skin care management prior to beginning treatment and will refer to the dermatology team for a same day review where needed. Finally, this clinic has enabled us to offer informal peer support for children and their families, which enhances their overall hospital experience. In summary, our Targeted Therapy Clinic, with the invaluable input of many members of the MDT, has improved the quality of care for children being treated on targeted agents. Given these benefits, we are keen to support other Primary Treatment Centres to develop similar clinics, especially with the increased use of targeted treatments across CNS tumours.