49 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.

    Current treatment in macrophage activation syndrome worldwide: a systematic literature review to inform the METAPHOR project

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    Objective: To assess current treatment in macrophage activation syndrome (MAS) worldwide and to highlight any areas of major heterogeneity of practice. Methods: A systematic literature search was performed in both EMBASE and PubMed databases. Paper screening was done by two independent teams based on agreed criteria. Data extraction was standardized following the PICO framework. A panel of experts assessed paper validity, using the Joanna Briggs Institute appraisal tools and category of evidence (CoE) according to EULAR procedure. Results: Fifty-seven papers were finally included (80% retrospective case-series), describing 1148 patients with MAS: 889 systemic juvenile idiopathic arthritis (sJIA), 137 systemic lupus erythematosus (SLE), 69 Kawasaki disease (KD) and 53 other rheumatological conditions. Fourteen and 11 studies specified data on MAS associated to SLE and KD, respectively. All papers mentioned glucocorticoids (GCs), mostly methylprednisolone and prednisolone (90%); dexamethasone was used in 7% of patients. Ciclosporin was reported in a wide range of patients according to different cohorts. Anakinra was used in 179 MAS patients, with a favourable outcome in 83% of sJIA-MAS. Etoposide was described by 11 studies, mainly as part of HLH-94/04 protocol. Emapalumab was the only medication tested in a clinical trial in 14 sJIA-MAS, with 93% of MAS remission. Ruxolitinib was the most reported Janus kinase inhibitor in MAS. Conclusion: High-dose GCs together with IL-1 and IFN gamma inhibitors have shown efficacy in MAS, especially in sJIA-associated MAS. However, the global level of evidence on MAS treatment, especially in other conditions, is still poor and requires standardized studies to be confirme

    Long-Term Follow-Up Roadmaps by Disease and Treatment

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