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 2021 Special Edition 2 - Oncology 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 2021 Special Edition - Oncology 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 End-of-Life Care Quality Domains and Candidate Indicators for 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 2021 Subject The topic of the resource Oncology Creator An entity primarily responsible for making the resource Mack JW; Fisher L; Kushi L; 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 Description An account of the resource Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective(s): To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participant(s): This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure: Stage IV or recurrent cancer. Main Outcomes and Measures: Care priorities. Result(s): Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.. Copyright © 2021 American Medical Association. All rights reserved. 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). 2021 2021 Special Edition - Oncology Altschuler A Brock KE Buchanan S Casperson M Chao CR Cooper RM Fasciano KM Fisher L JAMA Network Open Josephs I Kolevska T Kushi L Lakin JR Lefebvre A Mack JW Oncology Rodrigues G Schwartz CM Shalman DM Vega B Wall CB Wiener 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