{"title":"Comment on: Access to Legacy-Oriented Interventions at End of Life for Pediatric Oncology Patients: A Decedent Cohort Review.","authors":"Eman Zahra","doi":"10.1002/pbc.31438","DOIUrl":"https://doi.org/10.1002/pbc.31438","url":null,"abstract":"","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31438"},"PeriodicalIF":2.4,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625643","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}
Allison J L'Hotta, Bailey Martin-Giacalone, Jennifer Zink, Anna Fung, Andrew Myers, Kim Lipsey, Rachelle Brick
{"title":"Impact of Non-Pharmacological Cognitive Interventions on Real-World Daily Function in Children With Cancer: A Systematic Review.","authors":"Allison J L'Hotta, Bailey Martin-Giacalone, Jennifer Zink, Anna Fung, Andrew Myers, Kim Lipsey, Rachelle Brick","doi":"10.1002/pbc.31429","DOIUrl":"https://doi.org/10.1002/pbc.31429","url":null,"abstract":"<p><p>Childhood cancer survivors (CCS) frequently experience cognitive challenges, which impact their ability to participate in functional activities. This systematic review examines the effects of nonpharmacological cognitive interventions on functional outcomes (e.g., activities of daily living). We systematically searched eight databases (e.g., PubMed, EMBASE) from 2012 to 2023. Two team members independently screened articles and extracted article, intervention, sample characteristics, and outcome data. We assessed intervention reporting with the Template for Intervention Description and Replication. Fourteen studies met inclusion criteria, representing 12 unique trials. Four of the six trials evaluating Cogmed, a computerized working memory training program, demonstrated functional benefits; small to large effects were observed for academic achievement (Cohen's d = 0.28-0.87) and decreased inattention in daily life (d = -0.36 and -0.98). Other interventions included exergaming, math or reading interventions, occupational therapy, and neurofeedback. Less than half of studies reported on intervention personalization (n = 5), fidelity assessment (n = 4), or cost (n = 1). Study heterogeneity limited our ability to meta-analyze results for functional outcomes. Limited evidence and gaps in quality of intervention reporting are barriers to addressing the cognitive challenges of CCS. Standardizing functional outcome measurement, identifying effective interventions, and improving the quality of intervention reporting could accelerate the translation of intervention research to clinical practice.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31429"},"PeriodicalIF":2.4,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625652","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}
Judith M Kabat, Lauren K Boland, Melissa Williams, Ian Michelson, Alicia Lenzen, Ashley S Plant-Fox, Nitin Wadhwani, Angela J Waanders
{"title":"Socioeconomic Factors Associated With Participation in Postmortem Tissue Donation in Pediatric Central Nervous System Tumors.","authors":"Judith M Kabat, Lauren K Boland, Melissa Williams, Ian Michelson, Alicia Lenzen, Ashley S Plant-Fox, Nitin Wadhwani, Angela J Waanders","doi":"10.1002/pbc.31417","DOIUrl":"https://doi.org/10.1002/pbc.31417","url":null,"abstract":"<p><strong>Background: </strong>The gift of postmortem tissue donation is critical to pediatric central nervous system (CNS) research. As a \"Center of Excellence\" for the Gift from a Child Program, our institution has a well-established postmortem tissue donation program. Our objective was to determine if differences exist between patients who participated in and those that declined research-based autopsy.</p><p><strong>Procedure: </strong>We performed a single-institution retrospective chart review of pediatric patients with CNS malignancies who died from their disease between January 1, 2021 and December 31, 2022. Individual clinical, demographic, and socioeconomic data were assessed. Population-level data were estimated using Zip Code Tabulation Areas. Descriptive statistics were used to compare categorical data.</p><p><strong>Results: </strong>Among the 23 patient families approached during the study time frame, 8/23 (35%) consented to participation. In the consented (C) versus declined (D) group, there was a higher percentage of White, non-Hispanic/Latino patients by self-reported race (C: 88% vs. D: 55%), and no patients who identified as Asian or Hispanic/Latino (C: 0% and 0% vs. D: 13% and 27%). Of all patients approached, two required interpreters (9%), and both families declined participation. The rate of private insurance was higher in the consented group (C: 75% vs. D: 47%) compared to Medicaid as primary insurance in the declined group (C: 13% vs. D: 53%). CONCLUSIONS: Future research should aim to understand and improve identified disparities to ensure research advancements benefit all children with CNS malignancies. One area we plan to address is improved communication with non-English-speaking families by partnering with our interpreter services.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31417"},"PeriodicalIF":2.4,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625675","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}
Christineil Thompson, Darci Block, Zhen Wang, Nathan Foster, Leslie C Hassett, Dana Steien, Paul Galardy, Ahmad Al-Huniti
{"title":"The Global Prevalence of Iron Deficiency in Collegiate Athletes: A Systematic Review and Meta-Analysis.","authors":"Christineil Thompson, Darci Block, Zhen Wang, Nathan Foster, Leslie C Hassett, Dana Steien, Paul Galardy, Ahmad Al-Huniti","doi":"10.1002/pbc.31415","DOIUrl":"https://doi.org/10.1002/pbc.31415","url":null,"abstract":"<p><p>Athletes are at high risk of iron deficiency even without anemia. In this systematic review and meta-analysis that included 17,519 athletes in 122 references from 23 countries, participating in 62 unique sports over a 41-year timeframe, approximately 53.9% of student-athletes were found to be hypoferritinemic (ferritin concentration below 50 mcg/L) with 23.0% percent showing absolute iron deficiency based on current definitions (ferritin concentration below 20 mcg/L). These findings strongly suggest that changes in clinical practice guidelines are warranted to enable routine screening for iron deficiency among adolescent and collegiate athletes.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31415"},"PeriodicalIF":2.4,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625686","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":"Health-Related Quality of Life Among Discharged Patients With Hemophagocytic Lymphohistiocytosis: A Follow-Up Study.","authors":"Xiao Li, Kun Yu, Haipeng Yan, Longlong Xie, Xiangyu Wang, Ting Luo, Xiulan Lu, Xun Li, Zhenghui Xiao","doi":"10.1002/pbc.31431","DOIUrl":"https://doi.org/10.1002/pbc.31431","url":null,"abstract":"<p><strong>Purpose: </strong>Evaluating the post-discharge health-related quality of life (HRQoL) in hemophagocytic lymphohistiocytosis (HLH) and exploring its influencing factors.</p><p><strong>Patients and methods: </strong>The study was conducted at a regional pediatric medical center and involved pediatric patients diagnosed with HLH between July 2017 and July 2022. Healthy children of the same age and sex were included as the control group. The HRQoL and its associated factors in pediatric patients were assessed using the PedsQL 4.0 Parent Proxy Report and a general information survey.</p><p><strong>Results: </strong>In the first year following diagnosis, psychological health and overall score in HLH patients were worse than those of the control group. However, scores for emotional functioning, school functioning, physical health, psychosocial health, and overall scores in the HLH group increased over the years since diagnosis. By the 5-year post diagnosis, there were no significant differences between the HLH group and the control group in social functioning, school functioning, physical health, psychosocial health, and overall scores (p > 0.05). Generalized linear model analysis revealed that HLH patients who underwent transplantation have worse social functioning, physical health, overall score, while HLH patients with HLH recurrence have worse social functioning, psychosocial health, overall score (p < 0.05).</p><p><strong>Conclusion: </strong>The HRQoL of HLH patients is compromised after discharge; however, it progressively returns to levels comparable to those of healthy cohorts over time since diagnosis. Transplantation, and HLH recurrence are identified as factors affecting the HRQoL in HLH patients.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31431"},"PeriodicalIF":2.4,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625649","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}
Brianna M Miller, Mary Rose Yockel, Burton E Appel, Chiranjeev Dash, Nicole Harris-Hollingsworth, Nina S Kadan Lottick, Arnold L Potosky, Julia Rowland, Tara Suntum, Katherine Chaillet, Marcelo M Sleiman, Muriel R Statman, Kenneth P Tercyak
{"title":"Multilevel Facilitators and Barriers to Healthcare Organization and Delivery among Childhood Cancer Survivors.","authors":"Brianna M Miller, Mary Rose Yockel, Burton E Appel, Chiranjeev Dash, Nicole Harris-Hollingsworth, Nina S Kadan Lottick, Arnold L Potosky, Julia Rowland, Tara Suntum, Katherine Chaillet, Marcelo M Sleiman, Muriel R Statman, Kenneth P Tercyak","doi":"10.1002/pbc.31435","DOIUrl":"https://doi.org/10.1002/pbc.31435","url":null,"abstract":"<p><strong>Background: </strong>Childhood cancer survivors (CCS) are at risk for medical and psychosocial late effects of their disease and its treatment and are recommended to receive annual follow-ups. Yet, rates of follow-up adherence are suboptimal and may be influenced by the organization and delivery of their healthcare. This research aimed to examine experts' perceptions of facilitators and barriers to healthcare organization and delivery to CCS.</p><p><strong>Procedure: </strong>Thirty-one clinicians and administrators in a comprehensive cancer center's research consortium were interviewed about system-level factors that may promote or deter annual follow-ups among CCS. Interview transcripts were coded and inductively analyzed using a study-specific scheme.</p><p><strong>Results: </strong>Three main themes were identified: (1) healthcare system influences (59%); (2) social determinants of health (25%); and (3) intra/interpersonal factors (16%). Prominent subthemes included age-related changes in the transition of healthcare responsibility that disrupt ongoing CCS care (28.1%), the breadth and quality of psychosocial support available to navigate CCS to follow-up (13.5%), and transportation challenges (24.6%; especially in low-resource areas). In contrast, community trust facilitated follow-up (17.3%).</p><p><strong>Conclusion: </strong>The system of healthcare was prominent in receipt of follow-up by CCS, and further influenced by social determinants of health and intra/interpersonal factors. Easing transitions of responsibility (from parents to CCS, and acute care to survivorship teams) may be beneficial, especially when social determinants of health obstacles are present. Psychosocial wrap-around care is essential, along with promoting staff awareness of obstacles that CCS encounter in low-resource communities.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31435"},"PeriodicalIF":2.4,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625673","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}
Christineil Thompson, Eugenia Trushina, DeLisa Fairweather, Darci Block, Zhen Wang, Nathan Foster, Dana Steien, Paul Galardy, Ahmad Al-Huniti
{"title":"Iron Deficiency in Collegiate Athletes Obtaining Preparticipation Hemoglobinopathy Screening in the Upper Midwest.","authors":"Christineil Thompson, Eugenia Trushina, DeLisa Fairweather, Darci Block, Zhen Wang, Nathan Foster, Dana Steien, Paul Galardy, Ahmad Al-Huniti","doi":"10.1002/pbc.31437","DOIUrl":"https://doi.org/10.1002/pbc.31437","url":null,"abstract":"<p><strong>Objective: </strong>Iron and other biologically important metals are essential to mitochondrial function but are not routinely evaluated. Their equilibrium is critical to the optimal performance of cells with high metabolic activity such as neurons, cardiomyocytes, and skeletal myocytes. Teenagers are at a high risk of iron deficiency even without anemia. Metal ion imbalances can cause cognitive impairments, muscle weakness, and sudden cardiac death. We aim to assess the current prevalence of iron deficiency among collegiate athletes in the Upper Midwest.</p><p><strong>Methods: </strong>Our study is a multicenter, retrospective chart review of outpatient clinics in a regional healthcare system between January 2012 and December 2023, and a national public database between 2017 and March 2020. We reviewed the ferritin concentrations of regional collegiate athletes having preparticipation sport evaluations and nationally in the NHANES database.</p><p><strong>Results: </strong>We identified 643 unique individuals aged 16-21 years with 253 having ferritin screening. Iron deficiency (ferritin <20 mcg/L) was present in 24.5% and hypoferritinemia (ferritin <50 mcg/L) was present in 66.7% of collegiate athletes. From the NHANES database, 12.7% of active sampled participants aged 16-21 years were iron deficient.</p><p><strong>Conclusion: </strong>Our study findings suggest the need for universal screening for iron deficiency among collegiate athletes given the high prevalence of iron deficiency in both the retrospective chart review and NHANES database analysis. Given the critical role of metal ion homeostasis to optimal mitochondrial function, these findings may warrant the inclusion of ferritin testing in cardiac, neurological, and skeletal muscle evaluations.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31437"},"PeriodicalIF":2.4,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625668","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}
Eun Jae Kim, Madeline Hlobik, Laura Berbert, Jill Brace-O'Neill, Lynda Vrooman, Jennifer T Huang
{"title":"Impact of Persistent Alopecia on Quality of Life in Childhood Cancer and Transplant Survivors.","authors":"Eun Jae Kim, Madeline Hlobik, Laura Berbert, Jill Brace-O'Neill, Lynda Vrooman, Jennifer T Huang","doi":"10.1002/pbc.31432","DOIUrl":"https://doi.org/10.1002/pbc.31432","url":null,"abstract":"<p><strong>Background: </strong>While alopecia associated with chemotherapy, radiation, or hematopoietic stem-cell transplant (C/R/HSCT) is transient in most children, prior reports indicate nearly one in seven childhood cancer survivors suffer from persistent alopecia after their treatment is completed. The objective of our study was to better characterize the impact of C/R/HSCT-associated persistent alopecia on patient quality of life.</p><p><strong>Procedure: </strong>A cross-sectional cohort study of patients with a history of C/R/HSCT who were seen at Dana Farber Cancer Institute/Boston Children's Hospital Dermatology from August 2023 to February 2024 for any indication was conducted. Patients who completed their C/R/HSCT treatment regimen >6 months prior to visit were invited to fill out a survey on patient experience with persistent alopecia, including a modified Children's Dermatology Life Quality Index (CDLQI). Participants also underwent a full scalp examination.</p><p><strong>Results: </strong>Twenty one out of 47 (44.7%) patients in our cohort self-reported persistent alopecia. For nine additional patients, alopecia was not self-reported but noted by a dermatologist on exam. Median self-reported alopecia severity was 3 (interquartile range [IQR] 2-5.25) on a visual analog scale of 1-10. The most common pattern of alopecia was diffuse thinning. Median CDLQI score was 5 (IQR 2-7) for those with persistent alopecia, indicating a small negative effect of disease on patient quality of life. Fifteen (31.9%) patients report receiving information about persistent alopecia prior to their C/R/HSCT.</p><p><strong>Conclusions: </strong>Nearly half of childhood cancer and transplant survivors evaluated by dermatology suffered from persistent alopecia, which negatively impacted their quality of life. Better counseling on persistent alopecia should be provided to childhood cancer patients.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31432"},"PeriodicalIF":2.4,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625664","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}
Beth Apsel Winger, Christopher F Dowd, Kristin A Shimano, W Patrick Devine, Erin Mathes, Ilona Frieden, Carrie Schaefer, Alok Kothari
{"title":"Effective Use of ALK Inhibitors in EML4::ALK-Positive Lymphatic Malformations.","authors":"Beth Apsel Winger, Christopher F Dowd, Kristin A Shimano, W Patrick Devine, Erin Mathes, Ilona Frieden, Carrie Schaefer, Alok Kothari","doi":"10.1002/pbc.31441","DOIUrl":"https://doi.org/10.1002/pbc.31441","url":null,"abstract":"<p><p>Genetically targeted medications are emerging as important therapies for lymphatic malformations (LMs) unresponsive to sirolimus. We describe two patients with EML4::ALK-positive LMs, one with Gorham Stout disease and one with a large genitourinary (GU) LM, who were successfully treated with ALK inhibitors. This report adds ALK inhibitors to the growing toolbox of molecularly targeted therapies for LMs.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":" ","pages":"e31441"},"PeriodicalIF":2.4,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625646","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 “Long-term efficacy and safety of thalidomide treatment in children with β-thalassemia major”","authors":"","doi":"10.1002/pbc.31411","DOIUrl":"10.1002/pbc.31411","url":null,"abstract":"<p>Jian X, Liu X, Peng W, Li L, Hua F, Chen K, Zhang J, Luo S, Yang K, Wu Y. Long-term efficacy and safety of thalidomide treatment in children with β-thalassemia major. Pediatr Blood Cancer. 2023 Apr 28:e30391. https://doi.org/10.1002/pbc.30391.</p><p>The affiliation “Department of Hematology, West China Hospital, Chengdu, China” should be corrected to “Department of Hematology, West China Hospital, Sichuan University, Chengdu, China.”</p><p>Due to an oversight, the affiliation is incomplete for author Yu Wu.</p><p>The author byline and correspondence sections should read:</p><p>Jian Xiao<sup>1,2</sup>, Xiaodong Liu<sup>2</sup>, Wei Peng<sup>2</sup>, Lan Li<sup>2</sup>, Fang Hua<sup>2</sup>, Kun Chen<sup>2</sup>, Jin Zhang<sup>2</sup>, Shan Luo<sup>2</sup>, Kun Yang<sup>2*</sup>, Yu Wu<sup>1*</sup></p><p><sup>1</sup>Department of Hematology, West China Hospital, Sichuan University, Chengdu, China;</p><p><sup>2</sup>Department of Hematology, Zigong First People's Hospital, Zigong, China</p><p><sup>*</sup> Correspondence to:</p><p>Kun Yang, Department of Hematology, Zigong First People's Hospital, Zigong, 643000, China; E-mail: [email protected]</p><p>Yu Wu, Department of Hematology, West China Hospital, Sichuan University, Chengdu, 610041, China, E-mail: [email protected]</p><p>We apologize for this error.</p>","PeriodicalId":19822,"journal":{"name":"Pediatric Blood & Cancer","volume":"72 1","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-11-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/pbc.31411","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625644","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}