1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2019 Oncology List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Oncology 2019 List URL Address <a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1111/ecc.12879</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children Publisher An entity responsible for making the resource available European Journal of Cancer Care (Engl) Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource Adaptation; Adolescent; burden of treatment; Central Nervous System Neoplasms/therapy; Child; Death; family; Female; Hospitalization; Humans; Infant; inpatient stays; Length of Stay; leukaemia; Leukemia/therapy; Male; Medical Records; Neoplasms/*therapy; Newborn; paediatric oncology; place of death; Preschool; Psychological; Retrospective Studies; Switzerland; Terminal Care Creator An entity primarily responsible for making the resource Rost M; Wangmo T; Rakic M; Acheson E; Rischewski J; Hengartner H; Kuhne T; Elger B S Description An account of the resource Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">10.1111/ecc.12879</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2018 Acheson E Adaptation Adolescent burden of treatment Central Nervous System Neoplasms/therapy Child Death Elger B S European Journal of Cancer Care (Engl) Family Female Hengartner H Hospitalization Humans Infant inpatient stays Kuhne T Length Of Stay leukaemia Leukemia/therapy Male Medical Records Neoplasms/*therapy Newborn Oncology 2019 List Paediatric oncology Place Of Death Preschool Psychological Rakic M Retrospective Studies Rischewski J Rost M Switzerland Terminal Care Wangmo T