25 research outputs found

    When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers

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    Adolescent and young adult childhood cancer survivors experience health complications, late or long-term biomedical complications, as well as economic and psychosocial challenges that can have a lifelong impact on their quality-of-life. As childhood cancer survivors transition into adulthood, they must learn to balance their identity development with demands of everyday life and the near- and long-term consequences of their cancer experience, all of which have implications for the ways they use existing technologies and the design of novel technologies. In this study, we interviewed 24 childhood cancer survivors and six caregivers about their cancer survivorship experiences. The results of our analysis indicate that the challenges of transitioning to adulthood as a cancer survivor necessitate the development and management of multiple societal, relational, and personal boundaries, processes that social computing technologies can help or hinder. This paper contributes to the empirical understanding of adolescent and young adult cancer survivors’ social experiences. We further contribute sociotechnical design provocations for researchers, designers, and community members to support survivors

    Liver lesions in children post-oncologic therapy: Review of case reports and institutional observation

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    Purpose: Focal nodular hyperplasia (FNH), a benign hepatic tumor with ill-defined etiology, has been increasingly reported in children treated for extra-hepatic malignancies. Serial imaging or biopsy may be needed when survivors present with liver lesions. This study aims to review the literature, compare them with our institution’s cohort and propose a less invasive diagnostic imaging modality for FNH utilizing Magnetic resonance imaging (MRI) with gadoxetate disodium. Methods: We reviewed 13 case reports/series published over the last 20 years and compared them to our retrospective review of 16 childhood cancer survivors (CCS) found to have liver lesions on various imaging studies. Several patients underwent biopsy for diagnosis. Results: No specific generalizations could be made in terms of which specific chemotherapeutic agents cause FNH. Seven out of 11 patients underwent radiotherapy and/or hematopoietic stem cell transplant. Additionally, 36% (4/11) had been treated for neuroblastoma. From the literature review, the use of MRI with gadoxetate disodium was difficult to evaluate. Imaging was mainly accomplished using ultrasound, computerized tomography and MRI with gadolinium. The results were often indeterminate and resulted in biopsy in 6 cases in our institution. In contrast, 5 patients underwent initial MRI with gadoxetate disodium, which confirmed the diagnosis of FNH. Conclusion: CCS have an increased risk of developing liver lesions. Consistent with previously published literature, patients exposed to radiotherapy or cytoreductive agents used for hematopoietic stem cell transplants appeared to be at higher risk. A significant proportion (36%, 4/11) of our patients with FNH was previously treated for neuroblastoma. With the introduction of MRI with gadoxetate disodium, imaging may be a viable alternative to biopsy.

    Liver lesions in children post-oncologic therapy: Review of case reports and institutional observation

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    Purpose: Focal nodular hyperplasia (FNH), a benign hepatic tumor with ill-defined etiology, has been increasingly reported in children treated for extra-hepatic malignancies. Serial imaging or biopsy may be needed when survivors present with liver lesions. This study aims to review the literature, compare them with our institution’s cohort and propose a less invasive diagnostic imaging modality for FNH utilizing Magnetic resonance imaging (MRI) with gadoxetate disodium. Methods: We reviewed 13 case reports/series published over the last 20 years and compared them to our retrospective review of 16 childhood cancer survivors (CCS) found to have liver lesions on various imaging studies. Several patients underwent biopsy for diagnosis. Results: No specific generalizations could be made in terms of which specific chemotherapeutic agents cause FNH. Seven out of 11 patients underwent radiotherapy and/or hematopoietic stem cell transplant. Additionally, 36% (4/11) had been treated for neuroblastoma. From the literature review, the use of MRI with gadoxetate disodium was difficult to evaluate. Imaging was mainly accomplished using ultrasound, computerized tomography and MRI with gadolinium. The results were often indeterminate and resulted in biopsy in 6 cases in our institution. In contrast, 5 patients underwent initial MRI with gadoxetate disodium, which confirmed the diagnosis of FNH. Conclusion: CCS have an increased risk of developing liver lesions. Consistent with previously published literature, patients exposed to radiotherapy or cytoreductive agents used for hematopoietic stem cell transplants appeared to be at higher risk. A significant proportion (36%, 4/11) of our patients with FNH was previously treated for neuroblastoma. With the introduction of MRI with gadoxetate disodium, imaging may be a viable alternative to biopsy. </p

    A Multi-Modal Family Peer Support-Based Program to Improve Quality of Life among Pediatric Brain Tumor Patients: A Mixed-Methods Pilot Study

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    Background: Pediatric brain tumor (PBT) survivors and their families are at risk for diminished psychosocial and quality of life outcomes. Community-based programs that leverage peer support in the context of integrative modalities such as traditional Chinese medicine (TCM) represent a promising avenue for meeting the multidimensional needs of survivors and their families. Methods: Parents and children were enrolled in a 12-week program that included weekly group TCM, a moderated private Facebook support group designed through social support and modeling theory, and weekly parent-only health behavior education and yoga. Process measures and quantitative and qualitative survey data was collected to gauge participant adherence, acceptability, and satisfaction, as well as exploratory outcomes. Results: Eleven parents completed surveys at all time points. Six of nine families attended at least 80% of the group TCM sessions, and eight of nine families interacted in the Facebook support group at least five days a week. Parents reported high levels of satisfaction and perceived benefits for the program. Baseline emotional distress, health behaviors, and QoL measurements improved during the three-month intervention. Qualitative data indicated parents perceived both in-person and the Facebook group peer support contributed to the benefits of the program. Conclusion: This feasibility study demonstrated that a multimodal peer support-based intervention that included in-person and online group interaction is feasible and acceptable to parents of pediatric brain tumor patients. Further research on interventions for caregivers that include in-person and online group-based peer support is warranted, with the goal of exploring similar outcomes in other childhood cancer diagnoses

    Multicenter study of risk factors of unplanned 30-day readmissions in pediatric oncology.

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    BackgroundPediatric oncology patients have high rates of hospital readmission but there is a dearth of research into risk factors for unplanned 30-day readmissions among this high-risk population.AimIn this study, we built a statistical model to provide insight into risk factors of unplanned readmissions in this pediatric oncology.MethodsWe retrieved 32 667 encounters from 10&nbsp;418 pediatric patients with a neoplastic condition from 16 hospitals in the Cerner Health Facts Database and built a mixed-effects model with patients nested within hospitals for inference on 75% of the data and reserved the remaining as an independent test dataset.ResultsThe mixed-effects model indicated that patients with acute lymphoid leukemia (in relapse), neuroblastoma, rhabdomyosarcoma, or bone/cartilage cancer have increased odds of readmission. The number of cancer medications taken by the patient and the administration of chemotherapy were associated with increased odds of readmission for all cancer types. Wilms Tumor had a significant interaction with administration of chemotherapy, indicating that the risk due to chemotherapy is exacerbated in patients with Wilms Tumor. A second two-way interaction between recent history of chemotherapy treatment and infections was associated with increased odds of readmission. The area under the receiver operator characteristic curve (and corresponding 95% confidence interval) of the mixed-effects model was 0.714 (0.702, 0.725) on the independent test dataset.ConclusionReadmission risk in oncology is modified by the specific type of cancer, current and past administration of chemotherapy, and increased health care utilization. Oncology-specific models can provide decision support where model built on other or mixed population has failed

    “She Was a Little Social Butterfly”: A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors

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    Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were &gt;2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors
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