1 40 2 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 April 2025 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 April List 2025 URL Address <a href="http://doi.org/10.1001/jamanetworkopen.2024.54000" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2024.54000</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 Preferred and Actual Location of Death in Adolescents and Young Adults With Cancer Publisher An entity responsible for making the resource available JAMA Network Open Date A point or period of time associated with an event in the lifecycle of the resource 2025 Creator An entity primarily responsible for making the resource Odejide OO; Cernik C; Uno H; Fisher L; Xu L; Laurent CA; Cannizzaro N; Munneke J; Cooper RM; Lakin JR; Schwartz CM; Casperson M; Altschuler A; Wiener L; Kushi L; Chao CR; Mack JW Description An account of the resource Importance: Adolescent and young adult (AYA) patients with advanced cancer often die in hospital settings. Data characterizing the degree to which this pattern of care is concordant with patient goals are sparse. Objective: To evaluate the extent of concordance between the preferred and actual location of death among AYA patients with cancer. Design, setting, and participants: This multicenter retrospective cohort study included AYA patients (aged 12-39 years) with cancer who died between January 1, 2003, and December 31, 2019, after receiving care at Dana-Farber Cancer Institute and Kaiser Permanente Northern California or who died between January 1, 2009, and December 31, 2019, after receiving care at Kaiser Permanente Southern California. Data were analyzed from January 12 to July 1, 2024. Exposure: Death due to cancer. Main outcomes and measures: Medical record documentation of discussions about preferred location of death, actual location of death, and concordance between preferred and actual location of death. Results: The analytic population included 1929 AYA decedents, of whom 1049 (54.4%) were female; 227 (11.8%), Asian; 157 (8.1%), Black; 514 (26.6%), Hispanic; and 1184 (61.4%), White. Median age at death was 32 (IQR, 25-37) years. A total of 1226 AYA patients (63.6%) had a documented discussion about preferred location of death. Among those with a documented discussion, 594 (48.5%) did not have a documented preference, 402 (32.8%) wanted to die at home, 177 (14.4%) preferred a hospital death, and 48 (3.9%) desired inpatient hospice. Eight hundred and thirty patients (43.0%) died in acute care settings (256 [13.3%] intensive care unit [ICU], 548 [28.4%] hospital [non-ICU], and 26 [1.3%] emergency department), while 643 (33.3%) died at home and 47 (2.4%) in an inpatient hospice. Among the 528 patients with both a documented preferred death location of home, hospital, or inpatient hospice and documented death in one of these locations, the concordance between preferred and actual location of death was 401 (75.9%). One hundred and sixty-four of 172 patients (95.3%) who preferred a hospital death died there; 224 of 317 (70.7%) who preferred a home death died at home, and 13 of 39 (33.3%) who desired to die in inpatient hospice did so. Conclusions and relevance: Although many AYA patients with cancer died in their preferred location, over one-quarter of those who desired to die at home did not realize this goal. These findings highlight the need for effective solutions to enable goal-concordant care for this population. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1001/jamanetworkopen.2024.54000" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2024.54000</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). 2025 Altschuler A April List 2025 Cannizzaro N Casperson M Cernik C Chao CR Cooper RM Fisher L JAMA Network Open Kushi L Lakin JR Laurent CA Mack JW Munneke J Odejide OO Schwartz CM Uno H Wiener L Xu L 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 2022 Special Edition 3 - 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 2022 Special Edition 3 - Oncology List URL Address <a href="http://doi.org/10.1001/jamanetworkopen.2021.21888" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2021.21888</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 Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer Publisher An entity responsible for making the resource available JCO Oncology Practice Date A point or period of time associated with an event in the lifecycle of the resource 2022 Creator An entity primarily responsible for making the resource Odejide OO; Fisher L; Kushi LH; Chao CR; Vega B; Rodrigues G; Josephs I; Brock KE; Buchanan S; Casperson M; Cooper RM; Fasciano KM; Kolevska T; Lakin JR; Lefebvre A; Schwartz CM; Shalman DM; Wall CB; Wiener L; Altschuler A; Mack JW Description An account of the resource PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed. RESULTS: Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death. CONCLUSION: Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1001/jamanetworkopen.2021.21888" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.21888</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). 2022 2022 Special Edition 3 - Oncology List Adolescent Adult Altschuler A Brock KE Buchanan S Caregiver Casperson M Chao CR Child Cooper RM Fasciano KM Fisher L Humans JCO Oncology Practice Josephs I Kolevska T Kushi LH Lakin JR Lefebvre A Mack JW Neoplasms Neoplasms/th [therapy] Odejide OO Palliative Care Rodrigues G Schwartz CM Shalman DM Vega B Wall CB Wiener L Young Adult