Sunny C. Lin, Anna Kerr, Christine Bereitschaft, Bryan Sisk
{"title":"Patient Portal Use Among Patients With Vascular Anomalies and Their Caregivers","authors":"Sunny C. Lin, Anna Kerr, Christine Bereitschaft, Bryan Sisk","doi":"10.1002/pbc.31706","DOIUrl":"10.1002/pbc.31706","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Patients with vascular anomalies (VAs) experience poor communication and have unmet information needs. Online patient portals could mitigate communication barriers and support communication interventions. However, these portals are often underutilized.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Procedure</h3>\u0000 \u0000 <p>We retrospectively queried audit-log data from the Electronic Health Record (EHR) of a single large academic healthcare center for all patients seen by clinicians from a multidisciplinary specialist clinic with a diagnosed VA from January 2020 to January 2024. We connected audit-log data with patient demographics to examine how patients used the portal, and whether use varied by patient characteristics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We queried portal usage for 315 patients with vascular anomalies, of whom 43% were children, 19% were adolescents, and 38% were adults. Approximately half of patients’ portals were logged into during the study period (51%, <i>n</i> = 162). Of users who ever logged into the portal, the median number of logins per year were 35 (interquartile range 15 to 95). Multiple regression results show that portal access was higher for patients who are White, reside in a metropolitan area, and have lower Area Deprivation Index. Of users who ever logged into the portal, 77% viewed clinician notes, 90% viewed test results, and 71% engaged in messaging with a clinician at least once.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Half of patients and caregivers never use the portal, and patients from less urban areas with higher deprivation are even less likely to use the portal. As portals become more integrated into patient care, these inequities in portal access could lead to inequities in health outcomes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":"72 6","pages":""},"PeriodicalIF":2.4,"publicationDate":"2025-04-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143796112","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lucas Moreno, Steven G. Dubois, Nicholas Bird, Leona Knox, Donna Ludwinski, Andrew D. J. Pearson, Maja Beck-Popovic, Rochelle Bagatell
{"title":"A 2035 Clinical Research Vision and Roadmap for High-Risk Neuroblastoma","authors":"Lucas Moreno, Steven G. Dubois, Nicholas Bird, Leona Knox, Donna Ludwinski, Andrew D. J. Pearson, Maja Beck-Popovic, Rochelle Bagatell","doi":"10.1002/pbc.31660","DOIUrl":"10.1002/pbc.31660","url":null,"abstract":"<div>\u0000 \u0000 <p>Despite the introduction of anti-GD2 antibody therapy, outcomes for children with high-risk neuroblastoma remain poor, with low cure rates and a high proportion of survivors facing long-term sequelae. In this report, leaders from international cooperative groups and patient advocacy organizations review lessons learnt, identify current challenges, and provide a vision to bring new agents into frontline therapy to increase cure rates and reduce long-term toxicities over the next decade. The implementation of this vision requires improved global collaboration, incorporation of novel biomarkers, and a strengthened interaction with the regulatory landscape.</p>\u0000 </div>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":"72 6","pages":""},"PeriodicalIF":2.4,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788657","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Joel Livingston, Leanne Meakins, Aisha Bruce, David Stammers, Catherine Corriveau-Bourque, Anna Serebrin, Kerry Wong, Mary Bauman
{"title":"Rapid Enoxaparin Adjustment for Childhood Thrombosis/Thromboprophylaxis","authors":"Joel Livingston, Leanne Meakins, Aisha Bruce, David Stammers, Catherine Corriveau-Bourque, Anna Serebrin, Kerry Wong, Mary Bauman","doi":"10.1002/pbc.31691","DOIUrl":"10.1002/pbc.31691","url":null,"abstract":"<p>Enoxaparin dosing in children is imperfect and strategies to optimize initial therapy for patients at high-thrombotic risk would be of clinical benefit. This study looked at using peak-post-first-enoxaparin-dose anti-Xa to guide subsequent enoxaparin dose and timing of administration in children deemed high-thrombotic risk. Fourteen patients (seven aged <3 months, seven children/adolescents) were identified and reviewed retrospectively. All patients were commenced on a therapeutic enoxaparin dose within ≤20 h with average time to therapeutic anti-Xa of 15.4 h (range 4–34 h) for neonates/infants and 10.8 h (range 4–24 h) for children/adolescents. No patient had supratherapeutic anti-Xa or thrombotic/bleeding events. Further studies are needed to validate this approach.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":"72 6","pages":""},"PeriodicalIF":2.4,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/pbc.31691","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788614","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Uniting for Change: The GLOW Initiative and Its Impact on Nodular Lymphocyte-Predominant Hodgkin Lymphoma","authors":"Diana M. Fridlyand, Frank Keller","doi":"10.1002/pbc.31699","DOIUrl":"10.1002/pbc.31699","url":null,"abstract":"","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":"72 6","pages":""},"PeriodicalIF":2.4,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788615","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Correction to “Contemporary Surgical Management of Pediatric Non-Rhabdomyosarcoma Soft Tissue Sarcoma”","authors":"","doi":"10.1002/pbc.31719","DOIUrl":"10.1002/pbc.31719","url":null,"abstract":"<p>Polites SF, Rhee DS, Seitz G, et al. Contemporary Surgical Management of Pediatric Non-Rhabdomyosarcoma Soft Tissue Sarcoma. <i>Pediatr Blood Cancer</i>. 2024; 71:e31257. https://onlinelibrary.wiley.com/doi/10.1002/pbc.31257</p><p>The above-mentioned article for this Special Issue was mistakenly published in an earlier issue. The article's abstract is shown here:</p><p><b>ABSTRACT</b></p><p>Non-rhabdomyosarcoma soft tissue sarcoma (STS) comprises most STS in pediatric patients. It is a diverse set of over 30 histologic subtypes. Treatment is based on risk group determined by tumor size, grade, and the presence of metastases. Surgical resection is a cornerstone of therapy, as tumors are often resistant to chemotherapy or radiation. While patients with isolated tumors less than 5 cm may undergo upfront resection, strong consideration should be given to neoadjuvant chemoradiotherapy to ensure negative margins at surgical resection and optimal outcomes. Sentinel lymph node biopsy is strongly recommended for clear cell and epithelioid sarcomas. The most common metastatic site is the lung, and metastases should be resected at the end of therapy, when feasible. Unfortunately, many high-risk patients progress on therapy, and alternative strategies including earlier metastatic control require investigation.</p><p>We apologize for this error.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":"72 S2","pages":""},"PeriodicalIF":2.4,"publicationDate":"2025-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/pbc.31719","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143772932","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nisha Shariff, Anthony Lausch, Eric Bouffet, Derek S Tsang
{"title":"Three and Four Courses of Radiation for Children with Recurrent Diffuse Intrinsic Pontine Glioma.","authors":"Nisha Shariff, Anthony Lausch, Eric Bouffet, Derek S Tsang","doi":"10.1002/pbc.31695","DOIUrl":"https://doi.org/10.1002/pbc.31695","url":null,"abstract":"<p><strong>Purpose: </strong>Re-irradiation (RT2) for children with diffuse intrinsic pontine glioma (DIPG) is increasingly used upon recurrence; however, limited data are available for evaluating additional courses of radiotherapy (RT) for DIPG. The purpose of this case series was to report our institutional experience in treating patients with recurrent DIPG with three (RT3) or four (RT4) courses of RT.</p><p><strong>Material and methods: </strong>A retrospective study of all children with DIPG treated with RT3 or RT4 at a single institution was performed. Medical records were reviewed, and composite dosimetry across all delivered courses of RT was reconstructed. All patients received conventionally fractionated photon RT at 1.8-2 Gy per day, with RT3 or RT4 dose prescriptions ranging 18-21.6 Gy in 10-12 fractions to the brainstem.</p><p><strong>Results: </strong>Five patients were identified; four received three courses of RT while one received four to the brainstem. Median survival from the last course of radiation to death was 4 months; median survival from the first course of RT was 26 months. The median cumulative brainstem D0.03cc for all courses of radiation was 104 Gy (interquartile range: 102-112 Gy). The median time from RT2 to RT3 was 8 months, with partial neurologic recovery (80%) or stable symptoms (20%) after RT3. Radiological appearance of tumor or brainstem necrosis was reported in two patients after RT3 (40%).</p><p><strong>Conclusions: </strong>A third course of RT may be carefully considered as a treatment option for selected children with recurrent DIPG to provide palliation of neurologic symptoms.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31695"},"PeriodicalIF":2.4,"publicationDate":"2025-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143764583","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Karan K. Mirpuri, Bryan Sisk, Christine Bereitschaft, Anna M. Kerr
{"title":"The Role of Perceived Health-Related Information Adequacy in the Experiences of Parents of Children With Complex Vascular Anomalies","authors":"Karan K. Mirpuri, Bryan Sisk, Christine Bereitschaft, Anna M. Kerr","doi":"10.1002/pbc.31697","DOIUrl":"10.1002/pbc.31697","url":null,"abstract":"<div>\u0000 \u0000 <p>Parents of children with complex vascular anomalies (VAs) struggle to locate credible information. We explored whether their perceptions of the adequacy of VA-related information were associated with caregiver burden, anxiety, child health, and their ability to navigate the healthcare system and seek information. We also examined how their perceptions of clinician knowledge and communication affect their perceptions of information adequacy. A total of 86 parents completed our online survey. Perceived information adequacy was associated with lower anxiety, greater ability to navigate the healthcare system, greater clinician knowledge, and better clinician communication. These data identify important communication barriers that future research studies should address.</p>\u0000 </div>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":"72 6","pages":""},"PeriodicalIF":2.4,"publicationDate":"2025-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143764581","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}