Letter to the editor:–Comment on: Hematopoietic stem cell transplant for erythropoietic porphyrias in pediatric patients–Authors:1. Satesh Kumar, 2.Mahima Khatri–correspondence: Satesh Kumar, 4th year MBBS student, Shaheed Mohtarma Benazir Bhutto Medical College Liyari, KarachiAddress: Parsa citi Block E Floor 5th Flat 501 near police headquarter, Garden east Karachi.Contact: +92-3325252902 Email: Kewlanisatish@gmail.comOther author: Mahima Khatri, final year MBBS student , Dow university of Health sciencesEmail: Mahimakhatri12333@gmail.com–Word Count for: 484Disclosure: none to declareConflict of interest: none to declareAcknowledgements: none to declareComment on: Hematopoietic stem cell transplant for erythropoietic porphyrias in pediatric patientsTo the editor:We have read with great sincerity the article ”Hematopoietic stem cell transplant for erythropoietic porphyrias in pediatric patients”, YunZu M. Wang et al.1 It was a pleasure for us to read the concisely written article, and we congratulate the authors for their excellent efforts. The authors have succinctly written numerous scenarios. The final message of the article is that hematopoietic stem cell transplant (HSCT) rectifies the defective heme pathway and should be advised early in patients with severe erythropoietic porphyrias to minimize end-organ damage.Based on varied research2,3 on this lethal disease, we agree that HSCT should be considered early in patients to minimize the damage caused by this condition and enable patients to live a healthy lifestyle. However, we would like to mention a few points that we feel would enhance the quality of this article and add to the existing knowledge of this congenital disease. First, we speculate that the matching of samples would have drawn more meticulous results and increased the validity of the findings. The authors have not highlighted whether different mutations other than UROS exist. For instance, three male patients presented with the X-linked GATA1 gene mutation, an erythroid transcription factor on chromosome Xp11.23.2 Additionally, the study’s retrospective nature has limited reporting regimens accordingly, such as case reports in 2004 elaborated proper doses per body weight and intervals, I.e., Thymoglobulin and Busulphan were given at 5 mg/kg per day and cyclophosphamide at 65mg/kg per day as the conditioning regimen.4 Equivalently, prophylactic measures could have expatiated for the prevention of graft-versus-host disease.4 For illustration, patients were given cyclosporine infusion for 42 days with an initial dose of (3 mg/kg) followed by 6 mg/kg for six months orally to prevent any immunologic reaction to transplant.Secondly, as it is established that the immune system of the pediatric population is not well developed, the authors should have mentioned if any workup for infectious etiologies was sent, such as TORCH (Toxoplasmosis, Syphilis, Rubella, Cytomegalovirus, Herpes simplex virus, and HIV) infections.5 Furthermore, with other factors such as any environmental exposure exaggerating possible porphyria, the authors must have provided data on their environment and surroundings since birth, considering it may also impact. Given the health concerns in the paediatrics population, varying ways could be quoted for differential diagnosis, such as a simple bedside method is wood lamp examination of the diaper or urine if available, for coral-red fluorescence.5 Positivity of tests could raise concerns for further investigation, such as porphyrin levels and genetic testing.In addition to these, the authors could have commented on various other possible ways to avoid exposure to light, such as wearing sun-protective clothing and using window filters in cars and homes.2Yet, that could have also negatively impacted children as sunlight is a natural source of vitamin D. Finally, different approaches should be used to improve investigations and treatments. New treatment concepts should be augmented so that other therapeutic options become employable.
The grander challenge of pediatric oncology: disparities in access to careJoseph Lubega, M.D., M.S., C.P.E.Baylor College of Medicine6701 Fannin St., Ste. 1510 Houston, TX email@example.comPhone: +1 832 822 4242Fax: +1 832 825 1453Word count: 968Short running title: Disparities in access to pediatric cancer careKeywords: pediatric cancer, disparities, global, minoritiesThe excellent survival of children with cancer in the United States (US) is a grand achievement that has been accomplished mainly through five decades of translating biomedical discoveries to the bedside. However, it obscures the significantly inferior survival of racial-ethnic minorities in the US1, 2, and highlights the unconscionably abysmal survival of children with cancer globally3. Intrinsic differences in epidemiology of prognostically relevant tumor and host biological factors contribute to these survival disparities. However, as demonstrated by the fact that the widest survival disparities occur among children with the most curable cancers and risk-groups2,4, the primary driver of inferior survival among minorities and children globally islack of access to effective pediatric cancer care. Discovery of efficacious therapies was/is the grand challenge to pediatric oncology; ensuring access to effective care for all children in the US and globally is the grander challenge of pediatric oncology.Access to health services is a complex construct that includes5: (1) availability of the services to a specific population, (2) adequate supply of the services to the population, (3) ability to utilize the health services, which includes requisite financial (e.g., medical insurance coverage) and social (e.g., flexibility of work schedule to attend medical appointments) resources, and (4) suitability of the services to the socio-cultural context of all demographic groups in the population. For the majority of the world’s children that develop cancer (~80%) and live in low/middle income countries, infrastructure and expertise for evidence-based pediatric oncology services are simply unavailable or are extremely scanty. On the other hand, racial-ethnic minorities in the US also suffer from lack of access to adequate pediatric oncology care despite the apparent abundance of services – suggesting barriers to utilization and/or suitability of services.In this issue of Pediatric Blood & Cancer , Zheng D.J. et al present an evaluation of access to a psychiatry service that is integrated into a children’s cancer center – the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center (DF/BCH) from 2013 to 2017. The authors examined the relationship between utilization of this psychiatry service and patients’ socio-demographic characteristics. Among a sample of 394 children with cancer that were evaluated, racial/ethnic minorities had 52% lower odds of using the psychiatry service. Household material hardship and household income, two indicators of financial deprivation that may be considered the most obvious determinants of service utilization, did not influence utilization of this psychiatry service. For children who utilized the psychiatry service, 88% were diagnosed with a psychiatric disorder, 76% were given a pharmacological therapy and 62% were given a behavioral intervention for their diagnosis. The high occurrence of a specific diagnosis and therapeutic interventions for the children that used the psychiatry services suggest that this is a highly valuable service for children that are referred.Zheng D.J. et al’s findings demonstrate that availability of services does not equate to access, and that it is often difficult to pin-point the underlying reasons. Although racial-ethnic minorities in the US are associated with financial deprivation, financial indicators did not explain the disparity in utilization of psychiatry services at DF/BCH6. This suggests other utilization or suitability factors were at play. Such factors may include stereotypical beliefs, attitudes, or practices in the interactions between minorities and health providers that negatively influence clinical decision-making and effectiveness7. In this case such stereotypes may influence minority children’s or parents’ rapport with their oncology providers and willingness of parents to report mental or behavior symptoms, and oncologists’ suspicion and threshold to make a psychiatric referral. Other practical social-cultural factors such as language barriers can influence utilization of services even when foreign language translators are used, particularly in the culturally sensitive realm of mental illness and behavioral disorders8.Research to identify and quantify these disparities and their underlying mechanisms is critical to devise effective strategies that will overcome the systemic dynamics that deter minority children from accessing optimal cancer care. In the case of Zheng D.J. et al’s findings, it would be very informative to determine the exact nature of the disparity by evaluating whether, (1) minorities were genuinely less likely to require a psychiatric consultation – a potential difference in disease epidemiology, (2) minorities needed psychiatric services but were not referred – suggesting inferior quality of care, (3) minorities were referred but never followed through on the psychiatric referral – a utilization problem. Mixed methods study designs that complement quantitative data with qualitative insights and involving key players (e.g., providers and minority patients in this case), can unveil critical issues around usability and acceptability that often underly under-utilization of services.Global and US disparities in pediatric cancer care and outcomes epitomize the public health adage that discovery of efficacious biomedical interventions does not automatically translate into improved health services and outcomes for those that need them. Whereas many pediatric oncology researchers are acutely aware of the difficulty to translate research innovations into bedside interventions (aka,“the valley of death”)9, most children/families affected by cancer globally are on the wrong side of a pediatric oncology “death canyon” – a complex milieu of financial, social-cultural, business interests, and health systems barriers that lie between them and the bedside (Figure 1). Enough scientific technologies have made it to the bedside to cure them, but only a few children can make it to the bed.Research that bridges efficacious interventions and their delivery to children with cancer is critically needed. In addition to dedicateddisparities research , hybrid designs that build disparity questions in translational, clinical trials, and epidemiology research are likely to be efficient and even more informative. This requires broadening the scope of research teams and meticulous recruitment of appropriate socio-demographic strata of research participants. For global settings where the landscape of health systems infrastructure and organization and social-cultural norms are very different,implementation research is urgently needed to innovate strategies that will enhance the adoption of pediatric cancer best practices that suit the local context.
Comment on: [Pediatric oncology infrastructure and workforce training needs: A report from the Pediatric Oncology East and Mediterranean (POEM) Group]Julietta Simonyan1, Lusine Hakobyan1,2, Medea Anastasiadi1,2, Lilit Sargsyan1,2, Lala Vagharshakyan1,2, Ruzanna Papyan1,2, Lusine Krmoyan1,2, Mihran Martirosyan1, Samvel Danielyan3, Armen Muradyan1, Gevorg Tamamyan1,21 Yerevan State Medical University, Yerevan, Armenia2 Pediatric Cancer and Blood Disorders Center of Armenia, Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia3 Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia Corresponding Author: Simonyan Julietta, MD, Yerevan State Medical University, Koryun 2, AM0025, Yerevan, Armenia, Phone: +37499492660, Email: firstname.lastname@example.org Main text word count: 546 References: 1 A short running title: First pediatric hematology-oncology fellowship program in Armenia Keywords: pediatric hematology-oncology, fellowship, Armenia In the recent PBC paper by Khan and colleagues1, the pediatric oncology workforce training needs for the East and Mediterranean region were examined and reported. Armenia, as a part of the Pediatric Oncology East and Mediterranean (POEM) Group, was among the study participants and respondents. At the time of the survey in 2018, Armenia didn’t have a pediatric hematology/oncology training program, which was accordingly reported. In this letter, we describe the recent developments in that regard and the establishment of the first pediatric hematology/oncology fellowship program in our country. On September 4, 2014, the Government of the Republic of Armenia (RA) approved a list of narrow medical specialties of the RA, where one unified specialty - pediatric hematology/oncology was mentioned for the first time. Before that, two separate specializations were existing – pediatric hematology and pediatric oncology, and to obtain those qualifications, it was necessary, after the completion of MD program at the medical university (6 or 7 years), to continue either with an oncology residency program (2 years, which later became 3 years), or hematology program (3 years). Both curricula included pediatric and adult programs, accordingly, the fellows were practicing both pediatric and adult medicine. Before 1998 at the Yerevan State Medical University (YSMU), a faculty of Pediatrics existed with a pediatric-only MD program, however, it was closed in 1998. To become a pediatric hematologist or pediatric oncologist, after the pediatric MD program, graduates were entering into hematology or oncology training, focusing on the pediatric part. Taking into account the successful programs implemented into pediatric hematology/oncology in our country, as well as the dedication and willingness of the local specialists and the need for new specialists, on June 26, 2019, the Board of Trustees of YSMU decided to establish the Department of Pediatric Oncology and Hematology, with a “pediatric hematologist-oncologist” fellowship program and on July 1, 2019, by the decree of the Rector of YSMU, the Department was established. The fellowship program has been adapted based on the educational programs of St. Jude Children’s Research Hospital, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, and the American Board of Pediatrics programs. In the first year, five clinical fellows entered the program, and two hematology fellows of the 2nd and 3rd year, respectively, transferred to our program. During the second year, three more fellows successfully joined the program, so the number of pediatric hematology – oncology fellows became 10. Besides clinical skills and knowledge, special attention was dedicated to the research component of the program, and a mandatory requirement of conducting research and publication of at least one peer-reviewed article in an international reputable journal was introduced for the completion of the fellowship program. Another mandatory requirement for fellows is the knowledge of at least two foreign languages (mostly English and Russian). These two requirements were introduced for the first time in Armenia. It is worth to mention, that within 2 years since its establishment, pediatric hematology and oncology fellowship program became one of the successful programs at the medical university. Although, at the beginning we were thinking that high requirements might add additional difficulties to attract young physicians to join this emotionally and professionally difficult profession, but it was just the opposite: some of the best graduates with the highest performance chose pediatric hematology-oncology and joined the program․References1. Khan MS, Al-Jadiry MF, Tarek N, et al. Pediatric oncology infrastructure and workforce training needs: A report from the Pediatric Oncology East and Mediterranean (POEM) Group. Pediatr Blood Cancer. 2021;68(9). doi:10.1002/PBC.29190
Comment on: Broaching goals-of-care conversations in advancing pediatric cancerChirag Shah, Kayden Chahal, Ashni Chani, Tejas Kotwal Department of Life Sciences and Medicine, King’s College London, England, SE1 9RTWord Count: 464 wordsCorresponding Author: Chirag ShahMobile Number: (+44)07446146162E-mail Address: email@example.comDear Editor,We read with great interest the article by Kaye et al. that highlights an incredibly important and sensitive area of pediatric care planning1. As final year medical students from the UK who have completed a two-month pediatric placement, we were fortunate to have the opportunity to observe similar discussions and would like to share our own experiences in relation to this insightful article.It is critical to have goals of care conversations with pediatric cancer patients and their families to ensure they receive personalised support. These discussions have been linked with a higher quality of care, a decrease in undesirable aggressive treatment and better bereavement adjustment for caregivers2 3. From our own experiences in sitting in on these conversations, we appreciate the difficulty in navigating through these often highly emotive discussions. It should be noted that there should not be a “one gloves fits all” approach as each conversation must be tailored towards each individual patient. We commend the authors for identifying several strategies to help clinicians broach these conversations.The study cohort demographics shows that 47% of the patients were under the age of 12. During our placement we found it was difficult to engage children of this age for these types of conversations and we often solely relied upon parents’ views. It is essential to ascertain what patients and their families expect from these discussions to prevent missed opportunities from occurring. These can include inadequately responding to concerns over disease progression or addressing concerns by focusing on optimistic talk of future4.The paper highlights that goals of care conversations occur in the setting of advancing pediatric cancer care, however it is unclear when in the course of the illness these discussions start and how frequent they are. It is imperative that these discussions are initiated early, so that clinicians can align the care provided with what is most important for the patient. With the dynamic nature of cancer, it is vital that these conversations occur regularly, to allow the patient and their family to express any concerns when there is a change to their condition. It has been outlined that there are sometimes barriers that are perceived by clinicians that hinder discussions being initiated that need to be addressed. These can include the patients lack of capacity to make decisions, patients and family members’ difficulty accepting a poor prognosis and understanding the complications and limitations of life-sustaining treatment5.Consequently, further research is needed to explore the frequency of these conversations, barriers that prevent conversations being initiated and to determine what patients and their families expect, to prevent missed opportunities from occurring. In summary, it is vital that this area of pediatric cancer care continues to be researched. We hope our comments are useful for any future studies that take place.
Comment on: Secondary impacts of constipation in acute lymphoblastic leukemia in U.S. children’s hospitalsRameez Naqvi1, Saif Abbas Chatoo2, Zayn Ahmad31 UCL Medical School2 Cardiff School of Medicine3 Barts and The London School of Medicine and Dentistry* Correspondence to:Rameez Naqvi, UCL Medical School, 74 Huntley St, London WC1E 6DE, Tel.: 07851081725, Email: firstname.lastname@example.orgText word count 493;Abstract word count: N/A;Brief running title: Letter to the EditorKey words: Chemotherapy, ALL, Pediatric oncologyTables: 0Figures: 0We read, with great interest, the article by Belsky et al. on the effects of constipation in pediatric oncology patients, particularly looking at children who had undergone induction therapy for Acute Lymphoblastic Leukemia (ALL)1. As medical students who have recently had pediatric and oncology placements, we would like to share our thoughts on what we found to be a fascinating topic.The process of diagnosing and treating a child with cancer is an extremely distressing period for the patient and parent/carer of the patient. The majority of parents of pediatric oncology patients are said to be either mildly or severely distressed2. There is also the challenge that lies with the side effects of chemotherapy along with the struggle in communicating with some young children. Due to side effects, patients can present distressed and require hospital admission, under the guise that it is due to their original condition rather than the treatment. We applaud Belsky et al. for including patients who were readmitted in order to seek psychological support for the side effects of their treatment, as this is a factor often overlooked when looking at readmission data.On our placements, the diagnosis of constipation secondary to chemotherapy was difficult to navigate. We found that the side effects of the medication, such as constipation or fatigue, can cause some patient families to feel an incongruency with their agenda and the healthcare providers, as some find it difficult to perceive that the treatment can also cause the child pain. This can cause strain on an already difficult relationship to manage3. Although it was beyond the stated scope of this study, this would be an interesting secondary impact of chemotherapy side effects that can be explored in the same demographic of patients.As mentioned by Belsky et al., it can be difficult to attribute the constipation solely to the medication being used. There are a variety of confounding factors that can arise during induction therapy that can also cause constipation – dietary changes due to hospital admission, lack of water intake due to fatigue and lack of energy to exercise, to name a few. To further expand the study, looking into these factors and their magnitude of effect would provide a clearer understanding of the secondary effects of constipation.The study defined constipation by the presence of a diagnosis code or a patient who is receiving two constipation medications. The author recognizes that patients can receive these medications prophylactically, so ideally there should be a method of investigating the indication in these patients. It must also be said that diagnosis coding means that there is an element of human error which can cause inaccuracies in the data collected. This can be seen in some international studies4.Future retrospective studies should consider investigating the confounding factors and authenticating diagnoses in order to provide a more robust causality. Research into the true effects of chemotherapy in Pediatrics is crucial and we hope to see more research within this field.References:Belsky, J., Batra, S., Stanek, J. and O’Brien, S., 2021. Secondary impacts of constipation in acute lymphoblastic leukemia in U.S. children’s hospitals. Pediatric Blood & Cancer ,.Boyden, J., Hill, D., Nye, R., Bona, K., Johnston, E., Hinds, P., Friebert, S., Kang, T., Hays, R., Hall, M., Wolfe, J. and Feudtner, C., 2021. Pediatric palliative care parents’ distress, financial difficulty, and child symptoms. Journal of Pain and Symptom Management ,.Zarkowski, P. and Aksu, M., 2021. Legal and Ethical Issues in Treating Adolescent Patients. Dental Clinics of North America , 65(4), pp.815-826.Farhan, J., Al-Jummaa, S., Al-Rajhi, A., Al-Rayes, H. and Al-Nasser, A., 2005. Documentation and coding of medical records in a tertiary care center: a pilot study. Annals of Saudi Medicine , 25(1), pp.46-49.
Title: The Practical Matters of Including Patient Reported Outcomes in Pediatric Oncology Clinical CareEmily L Mueller, MD MSc1,2Center for Pediatric and Adolescent Comparative Effectiveness Research, Indiana University, Indianapolis, IN 46202Section of Pediatric Hematology Oncology, Department of Pediatrics, Indiana University, Indianapolis, IN 46202Correspondence:Emily L Mueller, MD, MSc705 Riley Hospital Dr, ROC 4340Indianapolis, IN 46202Cell: 312-399-0245 Fax: email@example.comAbstract word count: 0Main text word count: 6654Number of tables: 0Number of figures: 0Short Title: Practicalities of PRO in Clinical CareAbbreviations:
Purpose: The aim of this study was to evaluate the diagnostic accuracy of 18-fluorodeoxyglucose-positron emission tomography (18F-FDG-PET) and positron emission tomography/computed tomography (PET/CT) in imaging primary and metastatic lesions in Ewing sarcoma (ES). Methods: PubMed, Cochrane, Scopus, and Web of Science were searched for relevant studies. Data concerning 18F-FDG-PET/CT diagnostic accuracy were extracted and then analysed using Open Meta-analyst software. Reported diagnostic accuracy outcomes included sensitivity, specificity, negative likelihood ratio (NLR), positive likelihood ratio (PLR), and diagnostic odds ratio. Results: 31 studies with a total of 735 patients were included in this meta-analysis. The sensitivity and specificity of 18F-FDG PET/CT were: 92.6% and 74.1% for total ES lesions, 96.7% and 68.3% for ES primary lesions, 76.1% and 92.4% for lung metastasis, 83.9% and 93.2% for bone metastasis and 89.9% and 92.6% for ES recurrence respectively. Conclusion: 18F-FDG PET/CT is sensitive and accurate in diagnosing, staging, and detecting the recurrence of ES compared to non-PET imaging. It has high specificity for diagnosing recurrence of ES as well as lung and bone metastases.
Symptom distress and decreased quality of life (QOL) among children with cancer are well documented. Research is emerging on the child’s voice in QOL-symptom reports, but existing QOL questionnaires are burdensome and objective biologic markers are lacking. We examined children’s symptoms and QOL from parent and child perspectives and compared the results to one biologic marker (body posture). A cross-sectional secondary analysis of prospective data from children receiving creative arts therapy explored potential associations among demographics with and between QOL measures (PedsQL, Faces Scale, posture). Children (n = 98) ranged in age from 3-17 years (M = 7.8) and were in the first year of cancer treatment. No significant associations were found among the child’s sex, race/ethnicity, socioeconomic status (SES), or distance from hospital and total PedsQL. Older age was associated with worse total PedsQL, pain, nausea, worry, and posture (all ps < .05). Greater worry (β = 0.51) and worse posture (β = 0.41) were the QOL variables most strongly correlated with older age. Poorer posture was associated with worse child PedsQL (total score, nausea, treatment anxiety, cognitive) and parent PedsQL (pain, nausea). Worse scores on the Faces Scale, PedsQL, and posture were all correlated (rs = .21 - .39, all ps < .05). Interventions to improve QOL could target nausea, worry, and older patients. Accuracy and interpretation of symptom distress in children is problematic. The Faces Scale and posture may be suitable, readily obtained measures of QOL in pediatric oncology that hold promise.
Background: Sedation for lumbar punctures (LPs) in pediatric acute lymphoblastic leukemia (ALL) patients has been the standard for decades to reduce pain and anxiety. Recent studies on the potential long-term neurocognitive effects of cumulative propofol exposure has raised concerns about this practice. The recent pandemic introduced additional burdens to patients, with the requirement of a negative COVID-19 test prior to each sedated procedure. Procedure: These factors prompted a quality improvement intervention at our institution where we aimed to reduce post-Induction sedated lumbar punctures (LPs) by 50%. Our intervention included patient and family education followed by a simulation of the procedure for selected patients. Those converted to unsedated LPs were queried for their preference. Comparative cost, clinical time and LP success rates were collected for sedated and unsedated LPs. Results: Following the intervention, the percentage of LPs performed with sedation dropped from 100% to 48.1%. All LPs were successful using both techniques. Most patients who experienced the unsedated LP technique, and their guardians, strongly preferred this approach. Unsedated LPs significantly reduced clinical time (169 vs 83 minutes) for families, decreased expenditures ($5,736.16 reduction per procedure) and improved institutional opportunity cost due to a decrease in last-minute cancellations. Conclusion: We have shown that it is feasible to significantly reduce the use of sedation for LPs in patients with ALL, which has the potential to improve health and patient experience at a lower cost.
Vaccination is a critical tool in the prevention of COVID-19 infection for individuals and for communities. The mRNA vaccines contain polyethylene glycol (PEG) as a stabilizer. Currently in North America only the BNT162b2 (Pfizer-BioNTech) mRNA vaccine is approved individuals 12 to 17 years of age. Most patients treated with contemporary regimens for acute lymphoblastic leukemia receive Peg-asparaginase and 10-30% will develop allergic reactions. Optimizing access and safety for vaccine administration for these patients critical. This report describes a process developed to support COVID vaccination in a cohort of adolescents and young adults with a history of PEG-asparaginase allergy.
Objective: To evaluate group differences in social adjustment in survivors of pediatric ALL compared to survivor siblings, and controls; identify disease-related predictors of social adjustment in survivors; and explore whether executive functioning explained differences in social adjustment across groups and between disease-related predictors. Methods: Survivors of pediatric ALL (n=38, average age at diagnosis=4.27 years [SD=1.97]; average time off treatment=4.83 years [SD=1.52]), one sibling (if available, n=20), and one parent from each family were recruited from a long-term survivor clinic. Healthy age- and sex-matched controls (n=38) and one parent from each family were recruited from the community. Parents completed the Behavioral Assessment System for Children, Parent Rating Scale (BASC-3) Social Withdrawal subscale as a measure of social adjustment and the Behavior Rating Inventory of Executive Functions (BRIEF-2) as a measure of executive function for each of their children. Results: Parents reported that survivors had significantly worse social adjustment compared to controls (b=6.34, p=.004), but not survivor siblings. Among survivors, greater time off treatment (b=2.06, p=.058) and poorer executive functioning (b=0.42, p=.006) were associated with worse social adjustment. Executive function did not mediate differences in social withdrawal between survivors and controls or the relationship between time off treatment and social withdrawal among survivors. Conclusions: Survivors of pediatric ALL presenting to follow-up programs should be screened for difficulties with social adjustment. Future research should examine treatment- and non-treatment-related factors contributing to poorer social outcomes.
Title PageTitle : Pancytopenia in a child with cystic fibrosis and severe copper deficiency: Insight from bone marrow evaluationAuthors : Maggie D. Seblani1,2; Susanna A. McColley2,3,4; Shunyou Gong5; Lee M. Bass2,6; Sherif M. Badawy1,2Affiliations : 1 Division of Hematology, Oncology and Stem Cell Transplant, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA; 2 Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 3 Division of Pulmonary and Sleep Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA; 4 Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, Illinois, USA; 5 Division of Pediatric Pathology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL; 6 Division of Gastroenterology, Hepatology and Nutrition, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL.Correspondence: Sherif M. Badawy, MD, MS, MBBCh, 225 E. Chicago Ave., Box #30, Chicago, IL, 60611, office: 312-227-4836, fax: 312-227-9376, e-mail: firstname.lastname@example.orgWord count: 498Number of Tables, Figures, and Supplemental files : 1Running title: Bone marrow findings with severe copper deficiencyKeywords: pancytopenia, anemia, leucopenia, neutropenia, thrombocytopenia, copper deficiency, ring sideroblasts, copper supplement, cystic fibrosis, malabsorptionConflict of Interest: Author has no conflicts of interest to disclose.
Introduction/Objectives: We evaluated the length of time immunocompromised children (ICC) remain positive for SARS-CoV-2, identified factors associated with viral persistence and determined cycle threshold (CT) values of children with viral persistence as a surrogate of viral load. Methods: We conducted a retrospective cohort study of ICC at a pediatric hospital from March 2020-2021. Immunocompromised status was defined as primary, secondary or acquired due to medical comorbidities/immunosuppressive treatment. The primary outcome was time to first-of-two consecutive negative SARS-CoV-2 Polymerase chain reaction (PCR) tests at least 24 hours apart. Testing of sequential clinical specimens from the same subject was conducted using the Centers for Disease Control (CDC) 2019-nCoV Real-Time RT-PCR Diagnostic Panel assay. Descriptive statistics, Kaplan-Meier curve median event times and log-rank-sum tests were used to compare outcomes between groups. Results: Ninety-one children met inclusion criteria. Median age was 15.5 years (IQR 8-18 yrs), 64% were male, 58% were white, and 43% were Hispanic/Latinx. Most (67%) were tested in outpatient settings and 58% were asymptomatic. The median time to two negative tests was 42 days (IQR 25.0,55.0), with no differences in median time by illness presentation or level of immunosuppression. Seven children had >1 sample available for repeat testing, and 5/7 (71%) children had initial CT values of <30, (moderate to high viral load); 4 children had CT values of <30 3-4 weeks later, suggesting persistent moderate to high viral loads. Conclusions: Most ICC with SARS-CoV-2 infection had mild disease, with prolonged viral persistence >6 weeks and moderate to high viral load.