368 results on '"Rosenberg AR"'
Search Results
2. Perception of fear, distress and pain by parents of children undergoing a micturating cystourethrogram: A prospective study
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Srivastava, T, Betts, G, Rosenberg, AR, and Kainer, G
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- 2001
3. The Limitations of 'How Are You Feeling?'
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Rosenberg, AR, Orellana, Liliana, Wolfe, J, Dussel, V, Rosenberg, AR, Orellana, Liliana, Wolfe, J, and Dussel, V
- Published
- 2018
4. Palliative care for adolescents and young adults with cancer
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Rosenberg AR and Wolfe J
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lcsh:Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,lcsh:RC254-282 - Abstract
Abby R Rosenberg,1–3 Joanne Wolfe4–61Division of Pediatric Hematology/Oncology, Seattle Children’s Hospital, Seattle, WA; 2Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA; 3Department of Pediatrics, University of Washington, Seattle, WA; 4Department of Psychosocial Oncology and Palliative Care/Division of Pediatric Palliative Care, Dana-Farber Cancer Institute, Boston, MA; 5Department of Medicine/Division of Hematology/Oncology, Boston Children’s Hospital, Boston, MA; 6Department of Pediatrics, Harvard University School of Medicine, Boston, MA, USAAbstract: Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.Keywords: supportive care, end of life, psychosocial outcomes, psychosocial oncology, psychosocial needs, quality of life, pediatric oncology
- Published
- 2013
5. What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer
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Rosenberg,AR, Dussel,V, Orellana,L, Kang,T, Geyer,JR, Feudtner,C, Wolfe,J, Rosenberg,AR, Dussel,V, Orellana,L, Kang,T, Geyer,JR, Feudtner,C, and Wolfe,J
- Abstract
Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research. © Copyright 2014, Mary Ann Liebert, Inc. 2014.
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- 2014
6. The diagnosis and management of neonatal urinary ascites
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Oei, J, primary, Garvey, PA, additional, and Rosenberg, AR, additional
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- 2001
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7. Elevated creatinine after ingestion of model aviation fuel: Interference with the Jaffe reaction by nitromethane
- Author
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Booth, CJ, primary, Naidoo, D, additional, Rosenberg, AR, additional, and Kainer, G, additional
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- 1999
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8. MAG3 renal scintigraphy: Improved ability to make anatomical diagnoses in neonates
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Rossleigh, MA, primary, Farnsworth, RH, additional, Kainer, G, additional, and Rosenberg, AR, additional
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- 1995
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9. HMG CoA reductase inhibition and endothelial function in children with chronic kidney disease (CKD) - a pilot study.
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Mackie FE, Rosenberg AR, Harmer JA, Kainer G, and Celermajer DS
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- 2010
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10. Perception of fear, distress and pain by parents of children undergoing a micturating cystourethrogram: A prospective study.
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Kainer, Gad, Srivastava, T, Betts, G, Rosenberg, AR, and Kainer, G
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CHILD psychology ,ANXIETY ,URINARY organ disease diagnosis - Abstract
Objectives: To investigate whether parents’ expectations of their child’s fear, distress or pain during a micturating cystourethrogram (MCU) are realized. Methodology: Prospective study in which parents were asked to fill out two questionnaires using a visual analogue scale, one before (pre) and the other after the MCU procedure (post), was conducted at a tertiary level paediatric hospital in Sydney, Australia. The questionnaires were designed to compare the parents’ anticipated and experienced anxiety about their child’s procedure and their perception of fear, distress and pain in their child during and after the procedure. The parents’ satisfaction with information provided to them on the procedure was also recorded. Twenty-five parents participated in the study. Results: There were significant differences between anticipated and experienced parental anxiety. Parents’ reporting of fear, distress and pain in their child during the MCU and after the procedure was lower than they had anticipated. There was a significant correlation between the parents’ anxiety and their perception of severity of their child’s fear (r = 0.52, P = 0.009), distress (r = 0.48, P = 0.017) and pain (r = 0.50, P = 0.01) during the procedure, but less so with the child’s distress after the procedure (r = 0.39, P = 0.059). The parents were satisfied with the information given to them regarding the MCU procedure. Conclusions: Parents’ perception of their child’s fear, distress and pain during the MCU, as well as distress following the MCU, was not as severe as they had anticipated. Parental anxiety is an important factor in the perception of fear, distress and pain in children during and after the procedure. [ABSTRACT FROM AUTHOR]
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- 2001
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11. On clustering DAGs for task-hungry computing platforms
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Cordasco Gennaro, Rosenberg Arnold, and Sims Mark
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scheduling dags ,scheduling for task-hungry computing platforms ,scheduling for heterogeneous computing platforms ,Electronic computers. Computer science ,QA75.5-76.95 - Published
- 2011
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12. Suggestions for practice to accompany Neonatal Encephalopathy and Cerebral Palsy.
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Gibbs RS, Rosenberg AR, Warren CJ, Galan HL, and Rumack CM
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- 2004
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13. Authors' response.
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Neville KA, Verge CF, Rosenberg AR, O'Meara MW, and Walker JL
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- 2007
14. Effect of Quercetin on Hepatitis C Virus Life Cycle: From Viral to Host Targets
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Manuel Romero-Gómez, Sophie Clément, Matthieu Lemasson, Birke Bartosch, Francesco Negro, Arielle R. Rosenberg, José A Del Campo, Juan Bautista, Isidora Ranchal, Antonio Gil-Gómez, Ángela Rojas, M. García-Valdecasas, Virologie de l'hépatite C (EA 4474), Université Paris Descartes - Paris 5 (UPD5), Centre de Recherche en Cancérologie de Lyon (CRCL), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Centre Léon Bérard [Lyon]-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS), Unit for The Clinical Management of Digestive Diseases and CIBERehd, Hospital Universitario de Valme, Anenida de Bellavista s/n, Sevilla 41014, Spain, Ministerio de Economía y Competitividad (España), Instituto de Salud Carlos III, Junta de Andalucía, Asociación Española para el Estudio del Hígado, Centre de Recherche en Cancérologie de Lyon (UNICANCER/CRCL), Centre Léon Bérard [Lyon]-Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Centre National de la Recherche Scientifique (CNRS)-Institut National de la Santé et de la Recherche Médicale (INSERM), [Rojas,A, Garcia-Valdecasas,M, Gil-Gómez,A, Romero-Gómez,M] UCM Digestive Diseases, Virgen Macarena-Virgen del Rocío University Hospitals and CIBERehd, Institute of Biomedicine, University of Sevilla, Sevilla, Spain. [Rojas,A, Del Campo,JA, Ranchal,I] Unit for the Clinical Management of Digestive Diseases, Hospital Universitario Valme de Sevilla, Sevilla, Spain. [Cement,S, Negro,F] Division of Clinical Pathology, University Hospital, Geneva, Switzerland. [Lemasson,M, Rosenberg,AR] University Paris Descartes, EA 4474 'Hepatitis C Virology', France. [Bartosch,B] Inserm U1052, Cancer Research Centre, University of Lyon, France DevWeCan Laboratories of Excellence Network (Labex), Lyon, France. [Bautista,JD] Biochemistry and Molecular Biology, Faculty of Pharmacy, University of Sevilla, Spain. [Negro,F] Division of Gastroenterology and Hepatology, University Hospital, Geneva, Switzerland., and This research was supported by the Spanish Ministry of Economy, Innovation and Competition, Instituto de Salud Carlos III PI10/00611, PI13/01192 and by the Government of Andalusia (PI-0892-2012). We thank to AEEH, which awarded a postdoctoral research fellowship to ÁR.
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0301 basic medicine ,Quercetin/pharmacology ,Hepacivirus ,Flavonoid ,Organisms::Viruses::Hepatitis Viruses::Hepacivirus [Medical Subject Headings] ,Anatomy::Viral Structures::Virion [Medical Subject Headings] ,Gene Expression ,ddc:616.07 ,medicine.disease_cause ,Virus Replication ,Hepatitis ,Chemicals and Drugs::Chemical Actions and Uses::Pharmacologic Actions::Therapeutic Uses::Anti-Infective Agents::Antiviral Agents [Medical Subject Headings] ,Organisms::Eukaryota::Animals::Chordata::Vertebrates::Mammals::Primates::Haplorhini::Catarrhini::Hominidae::Humans [Medical Subject Headings] ,chemistry.chemical_compound ,Lipid droplet ,Quercetina ,Regulación hacia arriba ,heterocyclic compounds ,Cells, Cultured ,ddc:616 ,Infectivity ,chemistry.chemical_classification ,Tumor ,Cultured ,Multidisciplinary ,Genome ,biology ,Phenomena and Processes::Genetic Phenomena::Genetic Structures::Genome::Genome, Viral [Medical Subject Headings] ,Liver Neoplasms ,Gastroenterology ,virus diseases ,Hepatitis C ,3. Good health ,Genoma viral ,Diacylglycerol O-Acyltransferase/genetics/metabolism ,Lipid Droplets/drug effects/metabolism ,Host-Pathogen Interactions ,Hepatocellular/pathology/virology ,Quercetin ,France ,Viral genome replication ,Switzerland ,Host-Pathogen Interactions/drug effects ,Carcinoma, Hepatocellular ,Hepatitis C virus ,Cells ,Hepatocytes/drug effects/metabolism/virology ,Diseases::Virus Diseases::Hepatitis, Viral, Human::Hepatitis C [Medical Subject Headings] ,[SDV.CAN]Life Sciences [q-bio]/Cancer ,Gene Expression/drug effects ,Virus ,Article ,Cell Line ,03 medical and health sciences ,Chemicals and Drugs::Amino Acids, Peptides, and Proteins::Proteins::Viral Proteins::Viral Structural Proteins::Nucleocapsid Proteins::Viral Core Proteins [Medical Subject Headings] ,Cell Line, Tumor ,medicine ,Chemicals and Drugs::Heterocyclic Compounds::Heterocyclic Compounds, 2-Ring::Benzopyrans::Chromones::Flavonoids::Flavonols::Quercetin [Medical Subject Headings] ,Humans ,Diacylglycerol O-Acyltransferase ,Virion/drug effects/genetics/physiology ,Diacilglicerol o-acetiltransferasa ,Molecular Biology ,Chemicals and Drugs::Enzymes and Coenzymes::Enzymes::Transferases::Acyltransferases::Diacylglycerol O-Acyltransferase [Medical Subject Headings] ,Phenomena and Processes::Chemical Phenomena::Biochemical Phenomena::Biochemical Processes::Up-Regulation [Medical Subject Headings] ,Carcinoma ,Liver Neoplasms/pathology/virology ,Virion ,Lipid Droplets ,Hepacivirus/drug effects/genetics/physiology ,biology.organism_classification ,Virology ,digestive system diseases ,030104 developmental biology ,Phenomena and Processes::Microbiological Phenomena::Microbiological Processes::Virus Physiological Processes::Virus Replication [Medical Subject Headings] ,Virus Replication/drug effects/genetics ,chemistry ,Hepatocytes ,Antivirales ,pathology ,Laboratories - Abstract
Quercetin is a natural flavonoid, which has been shown to have anti hepatitis C virus (HCV) properties. However, the exact mechanisms whereby quercetin impacts the HCV life cycle are not fully understood. We assessed the effect of quercetin on different steps of the HCV life cycle in Huh-7.5 cells and primary human hepatocytes (PHH) infected with HCVcc. In both cell types, quercetin significantly decreased i) the viral genome replication; ii) the production of infectious HCV particles and iii) the specific infectivity of the newly produced viral particles (by 85% and 92%, Huh7.5 and PHH respectively). In addition, when applied directly on HCV particles, quercetin reduced their infectivity by 65%, suggesting that it affects the virion integrity. Interestingly, the HCV-induced up-regulation of diacylglycerol acyltransferase (DGAT) and the typical localization of the HCV core protein to the surface of lipid droplets, known to be mediated by DGAT, were both prevented by quercetin. In conclusion, quercetin appears to have direct and host-mediated antiviral effects against HCV., This research was supported by the Spanish Ministry of Economy, Innovation and Competition, Instituto de Salud Carlos III PI10/00611, PI13/01192 and by the Government of Andalusia (PI-0892-2012). We thank to AEEH, which awarded a postdoctoral research fellowship to ÁR.
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- 2016
15. Grief Trajectories of Bereaved Parents of Adolescents and Young Adults With Advanced Cancer: A Qualitative Analysis Using Phenomenology.
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Kingsley J, Taylor M, Bogetz JF, Trowbridge A, Rosenberg AR, and Barton KS
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- Humans, Female, Adolescent, Male, Young Adult, Adult, Qualitative Research, Attitude to Death, Middle Aged, Adaptation, Psychological, Bereavement, Spirituality, Neoplasms psychology, Parents psychology, Grief
- Abstract
Different parents grieve differently. However, research directed at understanding the important contextual or individual factors that influence the path each bereaved parent takes is lacking. In this qualitative analysis we seek to understand the array of bereaved parent experiences more completely. By deeply diving into one parent dyad using interpretive phenomenology analysis and situating that story within the conventional content analysis of 13 other bereaved parents of adolescents and young adults (AYAs) who died from advanced cancer, we illustrate the roles of religion/spirituality, maintaining a connection, and fulfilling parental roles as elements of grief processing. Clinicians and investigators should consider similar individualized approaches to understanding and supporting the grief experiences of bereaved parents before and after the death of a child., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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- 2024
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16. Quality of Care in the Last Two Years of Life for Children With Complex Chronic Conditions.
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Bogetz JF, Strub B, Bradford MC, McGalliard J, Shipman K, Jeyte A, Patneaude A, Johnston EE, Ananth P, Thienprayoon R, and Rosenberg AR
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- Humans, Male, Female, Infant, Retrospective Studies, Child, Preschool, Child, Chronic Disease, Adolescent, Hospitals, Pediatric, Infant, Newborn, Terminal Care, Quality of Health Care
- Abstract
Context: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL)., Objective: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital., Methods: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020 and March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across five domains: healthcare utilization, interprofessional supports, medical intensity, symptom management, and communication. Quality EOL care and healthcare services in the last two years of life were determined overall by age group and per patient. Descriptive statistics were used to evaluate demographic differences by age., Results: 266 children with CCCs died in the study timeframe; 45% were infants (n = 120), 52% (n = 137) were male, 42% (n = 113) were white, 64% (n = 170) were non-Hispanic, and 59% (n=156) had public insurance. Children had a median of three CCCs (IQR 2.4; range 1-8). On average, children met 69% (SD 13%) of EOL quality measures for which they were eligible. In the two years prior to death, 98% (n = 261) had an ICU admission, 75% (n = 200) had a procedure requiring sedation, and 29% (n = 79) had received cardiopulmonary resuscitation. 86% (n = 229) died in the ICU., Conclusion: In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last two years of life., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)
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- 2024
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17. Adaptation and feasibility of the Swedish Promoting Resilience in Stress Management intervention targeting adolescents and young adults newly diagnosed with cancer.
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Ödling M, Jervaeus A, Wengström Y, Rosenberg AR, Yi-Frazier JP, and Winterling J
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Objective: To describe the adaptation and feasibility of the Swedish version of the Promoting Resilience in Stress Management (PRISM) intervention among adolescents and young adults (AYAs) newly diagnosed with cancer., Methods: PRISM is a 5-session, manualized program designed to strengthen AYAs individual resources for managing stress by promoting resilience skills: stress-management, goal-setting, cognitive reframing and meaning-making. It is delivered 1:1 by an interventionist via video-visits. PRISM was developed in the US and adapted for a Swedish population. A feasibility study was conducted looking at recruitment, retention, acceptability of the intervention (evaluation survey and exit interviews) and pre- and post- exploratory psychosocial outcome measures (resilience, global health, emotional functioning and rehabilitation needs). Participants were recruited from a comprehensive cancer center in Sweden., Results: Of the 31 eligible individuals (16-30 years), 20 (65%) agreed to participate and 11 (55%) completed PRISM. Eighty-six percent (6/7) of the participants who completed the evaluation survey thought that the order of the modules and the content were "very good or good". The AYAs that participated in the exit interviews expressed that the programme contributed new knowledge and for some confirmed previous knowledge, which was valuable both during and after participation. The role of the interventionist was stressed as important to support participants through the programme. Suggestions for the future included making PRISM more personalized. Exploratory quantitative analyses suggested improved mean scores regarding resilience, global health and emotional functioning from pre- to post-intervention., Conclusions: This study suggests that participating in PRISM has the potential to guide AYAs during the initial period after a cancer diagnosis. Further work to make PRISM more personalized might increase AYAs' interest in, and completion of, PRISM.
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- 2024
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18. Resilience and distress among adolescents and young adults receiving hematopoietic cell transplantation: The Promoting Resilience in Stress Management randomized trial.
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Rosenberg AR, Taylor MR, Fladeboe KM, Zhou C, Levine DR, Johnston EE, Freyer DR, Comiskey L, Junkins CC, Bradford M, Odom JN, Baker KS, and Yi-Frazier JP
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- Humans, Adolescent, Female, Male, Young Adult, Child, Psychological Distress, Adult, Hematopoietic Stem Cell Transplantation psychology, Resilience, Psychological, Quality of Life, Depression psychology, Stress, Psychological therapy, Stress, Psychological psychology, Anxiety psychology, Anxiety therapy
- Abstract
Background: Adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT) are at high risk of poor psychosocial health. This study aimed to determine whether the Promoting Resilience in Stress Management (PRISM) intervention mitigated these risks during the first 6 months posttransplant., Methods: This multisite, parallel, randomized trial was conducted from April 2019 to March 2023. Eligible AYAs were aged 12-24 years, English speaking, and within 1 month of HCT for cancer or cancer predisposition syndrome. They were assigned 1:1 to PRISM (a brief, skills-based intervention targeting "resilience resources" [stress management, goal setting, cognitive reframing, and meaning making]) or usual care (UC). Outcomes included total symptoms of depression and anxiety (Hospital Anxiety and Depression Scale; primary outcome), hope (Snyder Hope Scale), resilience (10-item Connor-Davidson Resilience Scale), and health-related quality of life (HRQOL; Pediatric Quality of Life Inventory Cancer Module). Analyses leveraged multivariable linear regressions; exploratory analyses assessed the influence of baseline depression or anxiety., Results: Of 94 enrolled and randomized AYAs, the mean age was 16.7 years (SD, 4.2); 43 (46%) were female, 56 (60%) were non-Hispanic White, 22 (23%) were Hispanic, and nine (10%) were Black. Most (77%) had leukemia. Of n = 50 randomized to PRISM and n = 44 to UC, 37 (74%) and 33 (73%) completed all study procedures, respectively. In intention-to-treat analyses, PRISM did not affect 6-month depression and anxiety (β = -1.1; 95% CI, -3.7 to 1.5), hope (β = 0.83; 95% CI, -3.3 to 4.9), resilience (β = -0.01; 95% CI, -3.0 to 3.0), or HRQOL (β = 1.5; 95% CI, -4.7 to 7.9). Among AYAs with preexisting anxiety or depression, PRISM recipients reported greater 6-month improvements in hope (score change, +3.71; SD, 6.9) versus UC recipients (score change, -2.76; SD, 6.5) (p = .04)., Conclusions: Resilience coaching did not influence outcomes in this sample. Exploratory findings suggest it may be more effective when directed toward those with concurrent distress., (© 2024 American Cancer Society.)
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- 2024
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19. Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial.
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Eche-Ugwu IJ, Orellana L, Becker D, Bona K, Avery M, Feudtner C, Freedman JL, Kang TI, Rosenberg AR, Waldman ED, Ullrich CK, Dussel V, and Wolfe J
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- Humans, Male, Female, Child, Adult, Stress, Psychological, Palliative Care, Prevalence, Housing, Income, Cross-Sectional Studies, Randomized Controlled Trials as Topic, Neoplasms epidemiology, Neoplasms psychology, Parents psychology, Psychological Distress, Poverty, Anxiety epidemiology, Depression epidemiology
- Abstract
Background: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described., Methods: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other). Associations between HMH and parent distress measured by the State-Trait Anxiety Inventory-State and the 10-item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders., Results: Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non-White race, Spanish-speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid-only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7-14.7]) and depression (MD, 4.1 [95% CI, 1.7-6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8-18.5]; depression: MD, 4.9 [95% CI, 1.3-8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2-18.9]; depression: MD, 4.8 [95% CI, 1.8-7.8])., Conclusions: HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress., Plain Language Summary: In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association. Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing., (© 2024 The Author(s). Cancer published by Wiley Periodicals LLC on behalf of American Cancer Society.)
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- 2024
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20. Rationale and design of a randomized controlled clinical trial of a resilience-building intervention in adults with congenital heart disease.
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Steiner JM, Marshall AR, Kovacs AH, Engelberg RA, Brumback L, Stout KK, Longenecker CT, Yi-Frazier JP, and Rosenberg AR
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- Humans, Adult, Stress, Psychological therapy, Advance Care Planning organization & administration, Female, Male, Research Design, Feasibility Studies, Cognitive Behavioral Therapy methods, Goals, Psychosocial Intervention methods, Resilience, Psychological, Heart Defects, Congenital therapy, Heart Defects, Congenital psychology, Quality of Life
- Abstract
Background: Adults with congenital heart disease (ACHD) are at risk for lower quality of life (QOL) and psychological health. Behavioral interventions to meet their psychosocial needs are lacking. The aim of this study is to evaluate the feasibility of implementing the Promoting Resilience in Stress Management (PRISM) intervention in ACHD and its efficacy in increasing resilience in this population., Methods: We designed a phase II randomized controlled clinical trial of patients with moderate or complex ACHD, physiological stages C or D. Enrolled participants will be randomized to receive PRISM or usual care. PRISM is a manualized, skills-based behavioral intervention comprised of four one-on-one sessions targeting resilience resources (stress-management, goal-setting, cognitive reframing, meaning making), an optional session on advance care planning, and a facilitated family meeting. Participants in both groups will complete study questionnaires at enrollment and 3-months later. The primary aim is to describe feasibility, namely the proportions of patients who a) enroll in the study among those eligible, and b) complete the PRISM intervention among those randomized to that arm. We will also evaluate PRISM's efficacy by using linear regression models to compare changes in mean resilience scores between assigned groups. In exploratory analyses, we will evaluate effects on QOL, psychological distress, perceived competence for health care management, and comfort with advance care planning., Discussion: This study will provide rigorous evidence to determine the feasibility and efficacy of a brief intervention to promote resilience and psychosocial health in ACHD. Findings may guide the development of a future multi-site effectiveness study., Clinical Trial Registration: NCT04738474., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Inc.)
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- 2024
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21. On Resilience, Babies, and Bathwater.
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Rubenstein J, Franklin N, and Rosenberg AR
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- Humans, Resilience, Psychological
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- 2024
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22. Resilience Intervention Improves Stress-Related Gene Expression in Adolescent and Young Adult HCT Recipients.
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Taylor MR, Cole SW, Bradford MC, Zhou C, Fladeboe KM, Knight JM, Baker KS, Yi-Frazier JP, and Rosenberg AR
- Abstract
Overactivation of the stress response can influence cancer outcomes through immune-related pathways. Adolescents and young adults (AYAs) undergoing hematopoietic cell transplantation (HCT) are at risk for poor outcomes, yet there are limited behavioral interventions and no psychosocial biomarker data for this population. The Conserved Transcriptional Response to Adversity (CTRA) is an inflammation-related pattern observed in conditions of heightened stress and is associated with HCT outcomes. The objective of the current study was to explore the CTRA gene regulatory impact of Promoting Resilience in Stress Management (PRISM) intervention among AYAs receiving HCT. We hypothesized that patients who received the intervention would have favorable gene expression signatures compared to those in the control arm. This was an ancillary study within a randomized trial testing the PRISM intervention on psychosocial outcomes among AYAs aged 12 to 24 years receiving HCT (NCT03640325). CTRA was quantified through genome-wide transcriptional profiles obtained from whole blood collected at baseline, 1-, and 3-month post-HCT. Group differences in CTRA gene expression were estimated using mixed-effect linear models. There were no baseline group differences in CTRA expression, but PRISM participants showed a greater decline in CTRA at 1 month compared to controls (β -0.301 ± SE 0.114, P = .016), even when controlling for demographic (Group × Time interaction: F(2, 18) = 7.41, P = .004; β -0.386 ± 0.127, P = .007) and clinical covariates (Group × Time interaction: F(2, 20) = 7.03, P = .005; β -0.480 ± 0.144, P = .003). These differences were not detectable at 3 months (β -0.147 ± SE 0.120, P = .235). There was a change in stress-related gene expression among AYAs randomized to a psychosocial intervention. The stress-inflammation axis may be a targetable pathway in the AYA HCT population., (Copyright © 2024 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)
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- 2024
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23. Primary- Versus Secondary-Control Coping as Described by Adults With Congenital Heart Disease.
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Steiner JM, Fladeboe KM, Yi-Frazier JP, Kovacs AH, Jackson JL, Engelberg RA, and Rosenberg AR
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- Humans, Adult, Female, Male, Heart Defects, Congenital psychology, Adaptation, Psychological
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- 2024
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24. CGRP inhibits SARS-CoV-2 infection of bronchial epithelial cells, and its pulmonary levels correlate with viral clearance in critical COVID-19 patients.
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Barbosa Bomfim CC, Génin H, Cottoignies-Callamarte A, Gallois-Montbrun S, Murigneux E, Sams A, Rosenberg AR, Belouzard S, Dubuisson J, Kosminder O, Pène F, Terrier B, Bomsel M, and Ganor Y
- Subjects
- Humans, Bronchi virology, Bronchi metabolism, Male, Cell Line, Female, Middle Aged, COVID-19 Drug Treatment, Aged, Antiviral Agents therapeutic use, Calcitonin Gene-Related Peptide metabolism, SARS-CoV-2, COVID-19 metabolism, COVID-19 virology, Epithelial Cells virology, Epithelial Cells metabolism, Lung virology, Lung metabolism
- Abstract
Upon infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), patients with critical coronavirus disease 2019 (COVID-19) present with life-threatening respiratory distress, pulmonary damage, and cytokine storm. One unexplored component in COVID-19 is the neuropeptide calcitonin gene-related peptide (CGRP), which is highly abundant in the airways and could converge in multiple aspects of COVID-19-related pulmonary pathophysiology. Whether CGRP affects SARS-CoV-2 infection directly remains elusive. We show that in critical COVID-19 patients, CGRP is increased in both plasma and lungs. Importantly, CGRP pulmonary levels are elevated in early SARS-CoV-2-positive patients and restored to baseline upon subsequent viral clearance in SARS-CoV-2-negative patients. We further show that CGRP and its stable analog SAX directly inhibit infection of bronchial Calu-3 epithelial cells with SARS-CoV-2 Omicron and Alpha variants in a dose-dependent manner. Both pre- and post-infection treatments with CGRP and/or SAX are enough to block SARS-CoV-2 productive infection of Calu-3 cells. CGRP-mediated inhibition occurs via activation of the CGRP receptor and involves down-regulation of both SARS-CoV-2 entry receptors at the surface of Calu-3 cells. Together, we propose that increased pulmonary CGRP mediates beneficial viral clearance in critical COVID-19 patients by directly inhibiting SARS-CoV-2 propagation. Hence, CGRP-based interventions could be harnessed for management of COVID-19.IMPORTANCEThe neuropeptide CGRP is highly abundant in the airways. Due to its immunomodulatory, vasodilatory, and anti-viral functions, CGRP could affect multiple aspects of COVID-19-related pulmonary pathophysiology. Yet, the interplay between CGRP and SARS-CoV-2 during COVID-19 remains elusive. Herein, we show that pulmonary levels of CGRP are increased in critical COVID-19 patients, at an early stage of their disease when patients are SARS-CoV-2-positive. Upon subsequent viral clearance, CGRP levels are restored to baseline in SARS-CoV-2-negative patients. We further show that pre- and post-infection treatments with CGRP directly inhibit infection of Calu-3 bronchial epithelial cells with SARS -CoV-2, via activation of the CGRP receptor leading to decreased expression of both SARS-CoV-2 entry receptors. Together, we propose that increased pulmonary CGRP is beneficial in COVID-19, as CGRP-mediated inhibition of SARS-CoV-2 infection could contribute to viral clearance in critical COVID-19 patients. Accordingly, CGRP-based formulations could be useful for COVID-19 management., Competing Interests: The authors declare no conflict of interest.
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- 2024
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25. Bereaved Parents' Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study.
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Alexander AK, Martinez I, Tefera R, Beauchemin MP, Lawhon VM, Nichols A, Rosenberg AR, Bhatia S, and Johnston EE
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Objective: To explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity., Study Design: We performed secondary analysis of semistructured interviews of bereaved parents' perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior. Quotes related to FT were identified and iteratively grouped into themes without an a priori framework., Results: Most participants were non-Hispanic White (30; 55%), and the most common diagnoses were noncentral nervous system solid tumors (16; 33%) and central nervous system tumors (16; 33%). Children died at a mean age of 11 and a median of 4 years prior to the interview. Almost all parents (52; 95%) discussed FT, including all Black and Hispanic parents. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as well as work disruptions as contributors to FT at EOL. Barriers to financial wellness included navigating insurance, insufficient financial support from the hospital, and long-term FT from treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness. In some cases, finances prevented families from accessing nursing services and mental health support and affected EOL decisions., Conclusions: As FT affected almost all families' EOL experience, pediatric oncology programs should routinely screen for FT at EOL and ensure they have the resources to respond., Competing Interests: Declaration of Competing Interest This project was supported by grants to E.J. from Alex's Lemonade Stand and the Kaul Pediatric Research Institute. The other authors declare no conflicts of interest. The manuscript's abstract was previously featured in The American Society of Clinical Oncology (ASCO) journal as an ASCO meeting abstract from the 2023 ASCO Quality Care Symposium., (Copyright © 2024 Elsevier Inc. All rights reserved.)
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- 2024
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26. Bereaved parent preferences on quality end-of-life care for children with cancer in the South.
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Martinez I, Currie E, Davis ES, Kumar R, Lawhon V, Snaman JM, Tefera RB, Bhatia S, Rosenberg AR, and Johnston EE
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Purpose: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South., Methods: Semi-structured interviews were conducted with parents of children who died of cancer ≥6 months before at Children's of Alabama. Themes were identified via content analysis. Quotes related to medical intensity, chemotherapy, and location of death (LOD) were scored on 5-point Likert scales, ranging from 1 (comfort care, chemotherapy, or home death) to 5 (medically intense care, avoidance of chemotherapy, or hospital death)., Results: Twenty-seven bereaved parents (12 Black) were interviewed. Children died at a mean of 13.1 years (SD = 6.1 years) and a median of 3 years before the interview (range = 1-12 years). Ten children (42%) had central nervous system tumors and the majority (63%) died in the hospital. Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8-4.0]). Instead, parents considered their child's desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child's EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care (1.8 [1.3-2.8]) and chemotherapy (3.5 [2.7-4.1]) at EOL., Conclusions: Families did not see chemotherapy and comfort care as conflicting goals. They sought quality care emphasizing flexibility, quality time with their child, and open access to their care team, regardless of LOD., (© 2024 American Cancer Society.)
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- 2024
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27. Family characteristics and childcare patterns associated with early social functioning in cancer-bereaved parents.
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Snaman JM, Chen L, Mazzola E, Helton G, Feifer D, Broden E, McCarthy S, Rosenberg AR, Baker JN, and Wolfe J
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- Humans, Female, Male, Child, Middle Aged, Adult, Child, Preschool, Family Characteristics, Adolescent, Infant, Surveys and Questionnaires, Child Care psychology, Parents psychology, Neoplasms psychology, Bereavement
- Abstract
Background: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions., Methods: The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire)., Results: One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively)., Conclusions: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes., (© 2024 American Cancer Society.)
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- 2024
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28. Promoting Resilience in Stress Management for Adolescents With Type 1 Diabetes: A Randomized Clinical Trial.
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Yi-Frazier JP, Hilliard ME, O'Donnell MB, Zhou C, Ellisor BM, Garcia Perez S, Duran B, Rojas Y, Malik FS, DeSalvo DJ, Pihoker C, Bradford MC, Scott S, Devaraj S, and Rosenberg AR
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- Humans, Adolescent, Female, Male, Diabetes Mellitus, Type 1 therapy, Diabetes Mellitus, Type 1 psychology, Diabetes Mellitus, Type 1 blood, Resilience, Psychological, Quality of Life psychology, Stress, Psychological therapy, Self-Management methods, Self-Management psychology, Glycated Hemoglobin analysis
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Importance: Type 1 diabetes (T1D) requires demanding self-management health behaviors, and adolescents with T1D are at risk for poor psychosocial and medical outcomes. Developing resilience skills may help adolescents with T1D and elevated distress navigate common stressors and achieve positive outcomes., Objective: To test the efficacy of the Promoting Resilience in Stress Management (PRISM) intervention on levels of hemoglobin A1c (HbA1c), diabetes distress, self-management behaviors, resilience, and quality of life among adolescents., Design, Setting, and Participants: This phase 3, parallel, 1:1 randomized clinical trial that followed up 172 participants for 12 months was conducted from January 1, 2020, to November 30, 2022, at each of 2 children's hospitals, in Seattle, Washington, and Houston, Texas. Participants were ages 13 to 18 years with T1D for at least 12 months and elevated diabetes distress., Intervention: PRISM, a manualized, skills-based, individual intervention program that teaches stress management, goal setting, reframing, and meaning-making, facilitated by a coach and accompanied by a digital app, was delivered in three 30- to 60-minute sessions approximately 2 weeks apart., Main Outcomes and Measures: The 2 primary outcomes, diabetes distress and HbA1c levels, and 3 secondary outcomes, resilience, quality of life, and engagement in self-management behaviors, were assessed at baseline and 6 and 12 months after baseline. Linear mixed-effects regression models were used to evaluate associations between PRISM or usual care (UC) and these outcomes at both time points for the intention-to-treat population., Results: Among 172 adolescents (mean [SD] age, 15.7 [1.6] years), 96 were female (56%), and their baseline mean (SD) HbA1c level was 8.7% (2.0%). No differences were evident between PRISM and UC recipients in HbA1c levels (β, -0.21 [95% CI, -0.65 to 0.22]; P = .33) or diabetes distress (β, -2.71 [95% CI, -6.31 to 0.90]; P = .14) or any participant-reported outcome (eg, β, 2.25 [95% CI, -0.30 to 4.80]; P = .08 for self-management behaviors) at 6 months. At 12 months, there was no statistically significant difference between arms in HbA1c levels (β, -0.26 [95% CI, -0.72 to 0.19]; P = .25); however, PRISM recipients reported significantly greater amelioration of diabetes distress (β, -4.59 [95% CI, -8.25 to -0.94]; P = .01) and improvement in self-management behaviors (β, 3.4 [95% CI, 0.9 to 5.9]; P = .01) compared with UC recipients., Conclusions and Relevance: The findings in this randomized clinical trial of psychosocial and behavioral improvements associated with PRISM at 12 months illustrate the value of a strengths-based intervention. Integrating resilience skills-building with traditional diabetes care may be a promising approach for improving outcomes among adolescents with T1D and elevated diabetes distress., Trial Registration: ClinicalTrials.gov number: NCT03847194.
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- 2024
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29. Physician Perspectives on Responding to Clinician-Perpetuated Interpersonal Racism Against Black Patients with Serious Illness.
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Brown CE, Snyder CR, Marshall AR, Cueva KL, Jackson SY, Doll KM, Golden SH, Young B, and Rosenberg AR
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- Humans, Female, Male, Adult, Middle Aged, Racism psychology, Physician-Patient Relations, Black or African American psychology, Physicians psychology, Attitude of Health Personnel ethnology
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Background: Racism negatively affects clinical outcomes in Black patients, but uncertainty remains among physicians regarding how to address interpersonal anti-Black racism incidences involving them to facilitate racial healing and promote accountability., Objective: Elicit physician perspectives on addressing concerns from Black patients about interpersonal racism involving them or their team., Participants: Twenty-one physician subspecialists at an urban academic medical center., Approach: We conducted one-on-one semi-structured interviews to help inform the development of a clinician-facing component of a program to address the distress of racism experienced by Black patients with serious illness. We asked clinicians to describe experiences discussing racism with patients and identify additional resources to support these conversations., Main Measures: Physician perspectives, including barriers and facilitators, to promote racial healing and clinician accountability when discussing clinician-perpetuated interpersonal racism with Black patients., Key Results: Of the 21 participating physicians, 67% were women with a mean age of 44.2 years and mean of 10.8 years of experience as an attending physician. Four identified as Asian, three identified as Black, and 14 identified as White. Participants largely felt unprepared to discuss racism with their patients, especially if the harm was caused by them or their team. Participants felt patients should be given tools to discuss concerns about racism with their clinicians, but worried about adding additional burdens to Black patients to call out racism. Participants believed programs and processes with both patient- and clinicians-facing components had the potential to empower patients while providing resources and tools for clinicians to engage in these highly sensitive discussions without perpetuating more harm., Conclusions: Addressing and improving communication about interpersonal racism in clinical settings are challenging. Dual-facing programs involving patients and clinicians may help provide additional resources to address experiences of interpersonal racism and hold clinicians accountable., (© 2023. The Author(s).)
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- 2024
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30. Social support resources in adolescents and young adults with advanced cancer: a qualitative analysis.
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Lau N, Steineck A, Walsh C, Fladeboe KM, Yi-Frazier JP, Rosenberg AR, and Barton K
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- Humans, Female, Male, Adolescent, Young Adult, Quality of Life psychology, Adaptation, Psychological, Adult, Neoplasms psychology, Neoplasms therapy, Social Support, Qualitative Research
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Purpose: Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer., Methods: AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all "source of support" and "type of support" codes. We assigned a global "sufficiency of support code" to each AYA., Results: We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having "mixed support" and described a lack of support in some domains., Conclusion: AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group., (© 2024. The Author(s).)
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- 2024
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31. Mobile App Promoting Resilience in Stress Management for Adolescents and Young Adults With Cancer: Protocol for a Pilot Randomized Controlled Trial.
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Lau N, Palermo TM, Zhou C, Badillo I, Hong S, Aalfs H, Yi-Frazier JP, McCauley E, Chow EJ, Weiner BJ, Ben-Zeev D, and Rosenberg AR
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- Humans, Adolescent, Pilot Projects, Young Adult, Male, Female, Adult, Child, Telemedicine, Quality of Life psychology, Mobile Applications, Resilience, Psychological, Neoplasms therapy, Neoplasms psychology, Stress, Psychological therapy
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Background: Adolescents and young adults (AYAs) with cancer are at risk of poor psychosocial outcomes. AYAs grew up with the internet and digital technology, and mobile Health (mHealth) psychosocial interventions have the potential to overcome care access barriers., Objective: This pilot randomized controlled trial (RCT) aimed to establish the feasibility, acceptability, and preliminary efficacy of a fully automated mobile app version of the Promoting Resilience in Stress Management intervention (mPRISM). Promoting Resilience in Stress Management is an evidence-based intervention developed in collaboration with AYAs, based on stress and coping theory, resilience theory, and evidence-based coping strategies. We hypothesized that mPRISM would be feasible, acceptable, and appropriate., Methods: This is a parallel, 2-arm, single-site pilot RCT with a waitlist control design. The study will recruit 80 AYAs with cancer from a clinic. Eligible AYAs are aged 12 to 25 years, within 12 months of a new cancer diagnosis, receiving chemotherapy or radiation therapy, speak, read, or write in English, and are cognitively able to participate in study procedures. Recruitment by clinical research coordinators will occur remotely by phone, video, or text. Participants will be randomized to psychosocial usual care (UC) alone or UC plus mPRISM for an 8-week intervention period, and will remain unblinded to study condition. Enrolled participants will complete surveys at baseline before randomization, 8 weeks, and 3-month follow-up. Using a waitlist design, the UC arm will receive mPRISM upon completion of 3-month follow-up surveys. Those in the UC arm will complete 2 additional measurement points at immediate posttreatment and 3 months later. The primary outcomes of interest are feasibility, defined as ≥60% enrollment and ≥70% retention (ie, percentage of participants who completed the study), and "feasibility, acceptability, and appropriateness" as defined by cut-off scores ≥4/5 on 3 brief validated implementation outcome measures (feasibility of implementation measure, acceptability of intervention measure [AIM], intervention appropriateness measure [IAM]). We will apply top-box scoring for the implementation measures. Exploratory outcomes of interest include patient-reported health-related quality of life, resilience, distress, anxiety, depression, pain, and sleep. We will conduct an intention-to-treat analysis to compare the outcomes of the mPRISM arm versus the control arm with covariate-adjusted regression models. We will summarize individual digital usage metrics using descriptive statistics., Results: Since September 2023, we have enrolled 20 participants and recruitment is ongoing., Conclusions: Although our previous work suggests AYAs with cancer are interested in mHealth psychosocial interventions, such interventions have not yet been sufficiently evaluated or implemented among AYA oncology patients. mPRISM may serve as a potential mHealth intervention to fill this gap. In this study, we will test the feasibility, acceptability, and preliminary efficacy of mPRISM. This work will inform future larger-scale RCTs powered for efficacy outcomes., Trial Registration: ClinicalTrials.gov NCT05842902; https://clinicaltrials.gov/study/NCT05842902., International Registered Report Identifier (irrid): DERR1-10.2196/57950., (©Nancy Lau, Tonya M Palermo, Chuan Zhou, Isabel Badillo, Shannon Hong, Homer Aalfs, Joyce P Yi-Frazier, Elizabeth McCauley, Eric J Chow, Bryan J Weiner, Dror Ben-Zeev, Abby R Rosenberg. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 30.07.2024.)
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- 2024
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32. DeepLoc 2.1: multi-label membrane protein type prediction using protein language models.
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Ødum MT, Teufel F, Thumuluri V, Almagro Armenteros JJ, Johansen AR, Winther O, and Nielsen H
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- Internet, Protein Sorting Signals, Sequence Analysis, Protein, Membrane Proteins chemistry, Membrane Proteins metabolism, Software
- Abstract
DeepLoc 2.0 is a popular web server for the prediction of protein subcellular localization and sorting signals. Here, we introduce DeepLoc 2.1, which additionally classifies the input proteins into the membrane protein types Transmembrane, Peripheral, Lipid-anchored and Soluble. Leveraging pre-trained transformer-based protein language models, the server utilizes a three-stage architecture for sequence-based, multi-label predictions. Comparative evaluations with other established tools on a test set of 4933 eukaryotic protein sequences, constructed following stringent homology partitioning, demonstrate state-of-the-art performance. Notably, DeepLoc 2.1 outperforms existing models, with the larger ProtT5 model exhibiting a marginal advantage over the ESM-1B model. The web server is available at https://services.healthtech.dtu.dk/services/DeepLoc-2.1., (© The Author(s) 2024. Published by Oxford University Press on behalf of Nucleic Acids Research.)
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- 2024
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33. Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit.
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Bogetz J, Oslin E, Barton KS, Trowbridge A, Yi-Frazier J, Watson RS, and Rosenberg AR
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- Humans, Female, Male, Child, Prospective Studies, Child, Preschool, Adult, Adolescent, Infant, Surveys and Questionnaires, United States, Intensive Care Units, Pediatric, Parents psychology, Stress, Psychological, Nervous System Diseases psychology
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Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective: To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with "good parent" attributes that describe duties parents aim to uphold for their child. Design/Setting/Subjects: Prospective mixed-methods cohort study at a single U.S. children's hospital. Participants included English-speaking parents/legal guardians of a child with SNI with an expected length of stay >1 week and life expectancy >4 weeks. Measurements: Ten-point stress scale administered at PICU admission and discharge with open-ended response items. A subset of parents completed 1:1 semistructured interviews. Data were integrated to examine differences among participants whose stress increased, stayed the same, or decreased, and themes were compared with "good parent" attributes. Results: Twenty-five parents/legal guardians completed the surveys; 15 completed the interviews. Children were a median of 7 years old (interquartile range [IQR] 4, 9; range 1-21) and had a median PICU length of stay of 10 days (IQR 7, 15; range 3-62). Twenty percent ( n = 5) of parents were fathers, and 36% ( n = 9) had a minority racial/ethnic background. Stress was moderate at admission (mean 6.8, standard deviation [SD] ±1.7) and discharge (mean 6, SD ±2); 32% ( n = 8) reported stress trajectories that stayed the same or increased. Major themes included uncertainty, advocacy, and vulnerability and related closely to "good parent" attributes. Conclusion: Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with "good parent" attributes.
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- 2024
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34. Feasibility and Acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) Intervention for Caregivers of Children with Craniofacial Conditions.
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Fladeboe KM, Stock NM, Heike CL, Evans KN, Junkins C, Stueckle L, O'Daffer A, Rosenberg AR, and Yi-Frazier JP
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- Humans, Female, Male, Child, Preschool, Child, Adult, Surveys and Questionnaires, Infant, Parents psychology, Cohort Studies, Middle Aged, Resilience, Psychological, Feasibility Studies, Caregivers psychology, Craniofacial Abnormalities psychology, Craniofacial Abnormalities therapy, Stress, Psychological psychology
- Abstract
Objectives: Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation., Design: In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview., Participants: Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition., Intervention: PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1-2 weeks apart., Main Outcome Measures: Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively., Results: Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control., Conclusions: PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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- 2024
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35. Impact of Subspecialty Pediatric Palliative Care on Children with Heart Disease; A Systematic Review and Meta-analysis.
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Ting J, Songer K, Bailey V, Rotman C, Lipsitz S, Rosenberg AR, Delgado-Corcoran C, and Moynihan KM
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While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We conducted a systematic review using keywords related to palliative care, quality of life and care-satisfaction, and heart disease. We searched PubMed, EMBASE, CINAHL, CENTRAL and Web of Science in December 2023. Screening, data extraction and methodology followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations. Pairs of trained reviewers independently evaluated each article. All full texts excluded from the review were hand-screened for eligible references including systematic reviews in general pediatric populations. Two reviewers independently extracted: (1) study design; (2) methodology; (2) setting; (3) population; (4) intervention/exposure and control definition; (5) outcome measures; and (6) results. Of 4059 studies screened, 9 met inclusion criteria including two with overlapping patient data. Study designs were heterogenous, including only one randomized control and two historical control trials with SPPC as a prospective intervention. Overall, there was moderate to high risk of bias. Seven were single centers studies. In combined estimates, patients who received SPPC were more likely to have advance care planning documented (RR 2.7, [95%CI 1.6, 4.7], p < 0.001) and resuscitation limits (RR 4.0, [2.0, 8.1], p < 0.001), while half as likely to have active resuscitation at end-of-life ([0.3, 0.9], p = 0.032). For parental stress, receipt of SPPC improved scores by almost half a standard deviation (RR 0.48, 95%CI 0.10, 0.86) more than controls. Ultimately, we identified a paucity of high-quality data studying the influence of SPPC; however, findings correlate with literature in other pediatric populations. Findings suggest benefits of SPPC integration for patients with heart disease and their families., (© 2024. The Author(s).)
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- 2024
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36. Key Psychosocial Health Outcomes and Association With Resilience Among Patients With Adult Congenital Heart Disease.
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Steiner JM, Nassans K, Brumback L, Stout KK, Longenecker CT, Yi-Frazier JP, Curtis JR, and Rosenberg AR
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Background: Adult congenital heart disease (ACHD) can negatively impact quality of life (QOL). Strengthening resilience may improve this and other psychosocial outcomes important for living a meaningful life., Objectives: The purpose of this study was to describe resilience and key psychosocial health outcomes in ACHD and evaluate the associations between resilience and these outcomes., Methods: We conducted a prospective cohort study of outpatients with moderate or complex ACHD between May 2021 and June 2022. Participants completed surveys at baseline and 3 months, evaluating resilience (Connor-Davidson Resilience Scale-10), health-related QOL (EQ5D-3L, linear analog scale), health status (Euroqol visual analog scale), self-competence (Perceived Competence Scale), and psychological symptom burden (Hospital Anxiety and Depression Scale) and distress (Kessler-6)., Results: The mean participant age (N = 138) was 41 ± 14 years, 51% were female, and 83% self-identified as non-Hispanic White. ACHD was moderate for 75%; 57% were physiologic class B. Mean baseline resilience score (Connor-Davidson Resilience Scale-10) was 29.20 ± 7.54. Participants had relatively good health-related QOL, health status, and self-competence, and low psychological symptom burden and distress. Higher baseline resilience was associated with better values of all outcomes at 3 months (eg, 1 point higher resilience was associated with 0.92 higher linear analog scale; 95% CI: 0.52-1.32) with or without adjustment for demographics. After further adjusting for the baseline psychosocial measure, only the association between resilience and QOL measures at 3 months remained statistically significant., Conclusions: Resilience is positively associated with health-related QOL for outpatients with moderate or complex ACHD, though relationships are small in magnitude. Study findings can guide the application of resilience-building interventions to the ACHD population.
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- 2024
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37. Fostering resilience in adolescence and young adulthood: Considerations for evidence-based, patient-centered oncology care.
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Salsman JM and Rosenberg AR
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- Young Adult, Humans, Adolescent, Adult, Coping Skills, Emotions, Resilience, Psychological, Neoplasms therapy, Neoplasms psychology, Mindfulness
- Abstract
Adolescence and young adulthood are times of growth and change. For adolescents and young adults (AYAs) who are diagnosed with cancer, the demands of illness may compound normal developmental challenges and adversely affect physical, emotional, and social health. Nevertheless, AYAs have a tremendous capacity for psychosocial adaptation and resilience. Informed by the Transactional Model of Stress and Coping, observational studies in AYA oncology suggest consistent individual, social, and existential resources that may promote resilience. To date, few interventions have been designed to examine whether resilience can be taught and whether doing so affects patient-centered outcomes. Findings point to the potential value of multicomponent programs that include various skills-building strategies, such as stress management, mindfulness, gratitude, and positive reappraisal coping, among others. New research directions include the need to evaluate delivery strategies to enhance participant adherence and retention (e.g., eHealth modalities, optimization studies) and to examine program effectiveness in community-based oncology practices (e.g., less resource-rich settings in which most AYAs receive care). Ultimately, this scholarship may inform, refine, and strengthen intervention science in resilience more broadly., (© 2023 The Authors. Cancer published by Wiley Periodicals LLC on behalf of American Cancer Society.)
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- 2024
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38. A Communication and Decision-Making Framework for Pediatric Precision Medicine.
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Greene BL, Rosenberg AR, and Marron JM
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- Adolescent, Humans, Child, Parents, Medical Oncology, Communication, Decision Making, Precision Medicine, Neoplasms
- Abstract
Advances in genomic testing have been pivotal in moving childhood cancer care forward, with genomic testing now a standard diagnostic tool for many children, adolescents, and young adults with cancer. Beyond oncology, the role of genomic testing in pediatric research and clinical care is growing, including for children with developmental differences, cardiac abnormalities, and epilepsy. Despite more standard use in their patients, pediatricians have limited guidance on how to communicate this complex information or how to engage parents in decisions related to precision medicine. Drawing from empirical work in pediatric informed consent and existing models of shared decision-making, we use pediatric precision cancer medicine as a case study to propose a conceptual framework to approach communication and decision-making about genomic testing in pediatrics. The framework relies on identifying the type of genomic testing, its intended role, and its anticipated implications to inform the scope of information delivered and the parents' role in decision-making (leading to shared decision-making along a continuum from clinician-guided to parent-guided). This type of framework rests on practices known to be standard in other complex decision-making but also integrates unique features of genomic testing and precision medicine. With the increasing prominence of genomics and precision medicine in pediatrics, with our communication and decision-making framework, we aim to guide clinicians to better support their pediatric patients and their parents in making informed, goal-concordant decisions throughout their care trajectory., (Copyright © 2024 by the American Academy of Pediatrics.)
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- 2024
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39. Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU.
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Bogetz JF, Oslin E, O'Donnell M, Barton KS, Yi-Frazier JP, Watson RS, and Rosenberg AR
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- Child, Humans, Adult, Parents psychology, Hospitalization, Caregivers psychology, Intensive Care Units, Pediatric, Nervous System Diseases therapy
- Abstract
Background and Objectives: Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their child's PICU care to explore ways parents make meaning in relation to these stressors., Methods: This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents' psychosocial well-being around the time of their child's PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week., Results: Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4-11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36-42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child., Conclusions: Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI., (Copyright © 2024 by the American Academy of Pediatrics.)
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- 2024
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40. Resilience in adolescent and young adult oncology: Problems and prospects.
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Rosenberg AR and Salsman JM
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- Humans, Young Adult, Adolescent, Medical Oncology, Quality of Life, Resilience, Psychological, Neoplasms therapy
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- 2024
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41. Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study.
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Kaye EC, Smith J, Zhou Y, Bagatell R, Baker JN, Cohn SL, Diller LR, Glade Bender JL, Granger MM, Marachelian A, Park JR, Rosenberg AR, Shusterman S, Twist CJ, and Mack JW
- Subjects
- Child, Humans, Goals, Prospective Studies, Neoplasm Recurrence, Local therapy, Parents, Surveys and Questionnaires, Longitudinal Studies, Palliative Care, Neuroblastoma therapy
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Background: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal-setting., Methods: The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points., Results: A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p = .010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p = .008)., Conclusions: Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment-related suffering. Prognostic communication, however, does influence palliative goal-setting. Evidence-based interventions are needed to encourage timely, person-centered prognostic disclosure in the setting of advanced pediatric cancer., Plain Language Summary: Many parents of children with poor-prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering. Little is known about which factors influence parents to choose palliative care as their child's main treatment goal. To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time. We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals. However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care., (© 2023 American Cancer Society.)
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- 2024
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42. Family Responses to Different Types of Clinician Empathy Expression in Pediatric Care Conferences.
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Olszewski AE, Bogetz J, Bradford MC, Mercer A, Scott M, Fields B, Williams K, Rosenberg AR, and Trowbridge A
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- Humans, Child, Prospective Studies, Language, Decision Making, Shared, Empathy, Communication
- Abstract
Background: Clinician empathy positively impacts patient outcomes. Few studies have assessed the effects of different types of empathic expression. Objective: To describe how families respond when clinicians express empathy in different ways. Design: Prospective, mixed-methods cohort. Setting/Subjects: English and interpreted pediatric inpatient care conferences at a U.S. quaternary hospital between January 1, 2018 and January 1, 2021. Measurements: Directed content analysis of clinician empathic statements and family responses. Results: Of 29 patient-family dyads, 11 (39%) used language interpretation. In response to 80 clinician empathic statements, families expressed agreement or shared more 84% (67/80) of the time. Families shared more about their perspective in response to explore statements 71.4% (10/14) of the time, in response to validate statements 61% (17/28) of the time, and in response to respect/support statements 39% (11/28) of the time. Conclusion: Certain types of empathic statements may be more effective at prompting families to share more about their perspective, a key element of shared decision-making.
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- 2024
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43. Little patients, big impacts: a narrative review of palliative and emergent radiotherapy for pediatric cancers.
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Schaub SK, Oh J, Menghini AM, Taylor MR, Blau MH, Murphy B, Lo A, Chapple A, Rosenberg AR, Ermoian RP, and Tsang DS
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- Adult, Humans, Child, Prospective Studies, Retrospective Studies, Palliative Care, Neoplasms radiotherapy, Neoplasms pathology, Radiation Oncology
- Abstract
Background and Objective: The use of radiotherapy (RT) in the palliative and emergent settings for pediatric cancers is an under-utilized resource. Our objective was to provide an evidence-based review of the data to increase awareness of the benefit for this population along with providing guidance on pediatric specific treatment considerations for palliative care physicians, pediatric oncologists, and radiation oncologists., Methods: A narrative review was performed querying PubMed, MEDLINE, ClinicalTrials.gov databases, and supplemented with review articles, survey studies, current and recent clinical trials. When limited data existed, well-designed retrospective and prospective studies in the adult setting were evaluated and expert opinion was provided from pediatric oncologists., Key Content and Findings: Pediatric specific treatment considerations include the use of anesthesia, impact of treatment on the developing child, and logistical challenges of RT. Treatment modality and dose selection are driven by histology and symptomatic site of pain, where we discuss detailed recommendations for hematologic, central nervous system, and solid tumors. For palliative RT, an underlying principle of searching for the lowest effective dose to balance response rate with minimal acute and late treatment related morbidity and logistical hardships is of paramount importance when caring for a pediatric patient. Lastly, we outline how to effectively communicate this option to patients and their caregivers., Conclusions: Palliative RT can be of valuable benefit in most settings for patients with pediatric cancer. There is an unmet need for prospective data to inform on dose-fractionation along with patient and caregiver reported outcomes.
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- 2024
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44. Palliative Care in Adolescents and Young Adults With Cancer.
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Johnston EE and Rosenberg AR
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- Humans, Adolescent, Young Adult, Adult, Palliative Care psychology, Quality of Life, Caregivers psychology, Neoplasms therapy, Neoplasms psychology, Advance Care Planning
- Abstract
Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.
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- 2024
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45. Impact of the COVID-19 pandemic on pediatric faculty: a report from nine academic institutions.
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O'Connor TM, Guaman MC, Randell KA, Keenan HT, Snowden J, Mack JW, Camp EA, Perez O, Chang ML, Myers AL, Nigrovic LE, O'Toole J, Reed JL, Reese J, Rosenberg AR, Slater AC, Wootton SH, Ziniel SI, Yost HJ, Murray KO, Shekerdemian L, and Chumpitazi CE
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- Humans, Male, Female, Child, Adult, Cross-Sectional Studies, Faculty, Medical, Schools, Pandemics, COVID-19
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Background: The COVID-19 pandemic affected home and work routines, which may exacerbate existing academic professional disparities. Objectives were to describe the impact of the pandemic on pediatric faculty's work productivity, identify groups at risk for widening inequities, and explore mitigation strategies., Methods: A cross-sectional study of faculty members was conducted at nine U.S. pediatric departments. Responses were analyzed by demographics, academic rank, and change in home caregiving responsibility., Results: Of 5791 pediatric faculty members eligible, 1504 (26%) completed the survey. The majority were female (64%), over 40 years old (60%), and assistant professors (47%). Only 7% faculty identified as underrepresented in medicine. Overall 41% reported an increase in caregiving during the pandemic. When comparing clinical, administrative, research, and teaching activities, faculty reported worse 1-year outlook for research activities. Faculty with increased caregiving responsibilities were more likely to report concerns over delayed promotion and less likely to have a favorable outlook regarding clinical and research efforts. Participants identified preferred strategies to mitigate challenges., Conclusions: The COVID-19 pandemic negatively impacted pediatric faculty productivity with the greatest effects on those with increased caregiving responsibilities. COVID-19 was particularly disruptive to research outlook. Mitigation strategies are needed to minimize the long-term impacts on academic pediatric careers., Impact: The COVID-19 pandemic most negatively impacted work productivity of academic pediatric faculty with caregiving responsibilities. COVID-19 was particularly disruptive to short-term (1-year) research outlook among pediatric faculty. Faculty identified mitigation strategies to minimize the long-term impacts of the pandemic on academic pediatric career pathways., (© 2023. The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.)
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- 2024
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46. Inequitable Poverty Exposures: A Subspecialty Opportunity to Address Disparities.
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Karvonen KA, Umaretiya PJ, Koch VB, Flamand Y, Aziz-Bose R, Ilcisin L, Valenzuela A, Cole PD, Gennarini LM, Kahn JM, Kelly KM, Tran TH, Michon B, Welch JJG, Wolfe J, Silverman LB, Rosenberg AR, and Bona K
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- Humans, Healthcare Disparities, Poverty, Health Status Disparities
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- 2024
- Full Text
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47. ASCO Ethical Guidance for the Practical Management of Oncology Drug Shortages.
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Hantel A, Spence R, Camacho P, Bradbury AR, Denburg AE, Jagsi R, Moy B, Rathmell WK, Rosenberg AR, Symington B, Marron JM, and Peppercorn J
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- Humans, Medical Oncology, Neoplasms drug therapy
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- 2024
- Full Text
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48. Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment.
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Bogetz JF, Yu J, Oslin E, Barton KS, Yi-Frazier JP, Watson RS, and Rosenberg AR
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- Child, Humans, Empathy, Hospitalization, Intensive Care Units, Pediatric, Parents psychology, Caregivers psychology
- Abstract
Context: Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences., Objective: To examine how parents and family caregivers of children with SNI navigate stress during PICU admissions., Methods: This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated., Results: Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents., Conclusion: Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)
- Published
- 2023
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49. GraphPart: homology partitioning for biological sequence analysis.
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Teufel F, Gíslason MH, Almagro Armenteros JJ, Johansen AR, Winther O, and Nielsen H
- Abstract
When splitting biological sequence data for the development and testing of predictive models, it is necessary to avoid too-closely related pairs of sequences ending up in different partitions. If this is ignored, performance of prediction methods will tend to be overestimated. Several algorithms have been proposed for homology reduction, where sequences are removed until no too-closely related pairs remain. We present GraphPart, an algorithm for homology partitioning that divides the data such that closely related sequences always end up in the same partition, while keeping as many sequences as possible in the dataset. Evaluation of GraphPart on Protein, DNA and RNA datasets shows that it is capable of retaining a larger number of sequences per dataset, while providing homology separation on a par with reduction approaches., (© The Author(s) 2023. Published by Oxford University Press on behalf of NAR Genomics and Bioinformatics.)
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- 2023
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50. Race, ethnicity, and experienced racism are associated with adverse physical and mental health outcomes among cancer survivors.
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Karvonen KA, Balay-Dustrude E, Do A, Bradford MC, Phipps A, and Rosenberg AR
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- Humans, Ethnicity, Neoplasms psychology, Outcome Assessment, Health Care, Sleep Deprivation, Depression, Cancer Survivors psychology, Racism, Mental Health
- Abstract
Introduction: Survivors of cancer are at risk for adverse mental and physical health outcomes. It is not well understood, however, how these outcomes are differentially experienced according to an individual's exposure to racism. This study sought to evaluate associations of race/ethnicity, and experiences of racism, with adverse health outcomes in survivors of cancer., Methods: Using the Behavioral Risk Factor Surveillance System database, data from 48,200 survivors between 2014 and 2020 were evaluated. Survey items included negative physical and emotional symptoms as a result of race-based treatment. Outcomes of interest included days of poor mental and physical health, activity limitations, depression, and inadequate sleep. Associations using prevalence ratios were evaluated., Results: All historically marginalized racial/ethnic groups were more likely to experience at least one adverse health outcome compared with non-Hispanic White survivors. Those who physically experienced racism were 2.1 (95% CI, 1.64-2.69) times as likely to report poor physical health, 3.51 (95% CI, 2.61-4.71) times as likely to report poor mental health, 2.14 (95% CI, 1.77-2.58) times as likely to report inadequate sleep, 2.33 (95% CI: 1.91-2.83) times as likely to report depression, and 1.42 (95% CI, 1.04-1.93) times as likely to report activity limitations compared with those who have not experienced racism. Similar associations were observed for emotionally experienced racism., Discussion: Racial inequities in health outcomes for survivors of cancer from marginalized racial/ethnic groups are well-established. Experienced racism contributes to adverse health outcomes and widens these disparities. Improving outcomes for survivors of cancer may require screening for experienced racism., Plain Language Summary: Survivors of cancer from marginalized racial/ethnic populations are more likely to have poor mental and physical health than their non-Hispanic White counterparts. Whether survivors from certain racial/ethnic populations of smaller size also have poorer health is less well understood. Generally, individuals who report experienced racism also report poor health, this association has not been studied in survivors of cancer. This study, from a national survey of survivors of cancer, describes disparities in health outcomes experienced by a variety of racial and ethnic populations. Our findings suggest racism is associated with poor mental and physical health in survivors of cancer., (© 2023 American Cancer Society.)
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- 2023
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