Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.
Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.
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DOI：
10.1001/jamanetworkopen.2021.21888
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发表时间：
2021-08-02
影响因子：
13.8
通讯作者：
Altschuler A
中科院分区：
文献类型：
--
作者：
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
患有癌症的青少年和年轻人、他们的家人和临床医生认为临终关怀的重要内容是什么？对23名青少年和年轻人，28名家庭照顾者和29名临床医生的访谈进行了定性研究，确定了7个不同的生命末期优先领域：关注身体症状，关注生活质量，心理和精神护理，沟通和决策，与临床医生的关系，护理和治疗以及独立性。虽然有些领域反映了成年人现有的质量领域，但有些领域是独特的，或者对这一年轻群体有独特的表现。本研究中确定的与晚期癌症青少年和年轻人相关的优先领域可用于质量测量。尚未制定针对12至39岁癌症青少年和年轻人（AYAs）的临终关怀质量指标。从AYA、家庭照顾者和临床医生的角度确定临终关怀的优先领域，并提出反映优先事项的候选质量指标。这项定性研究于2018年12月6日至2021年1月5日进行，没有额外的随访。与患者，家庭护理人员和临床医生进行了深入的访谈，并包括对所得成绩单的内容分析。一个多学科咨询小组将优先事项转化为拟议的质量指标。访谈在Dana-Farber癌症研究所、Kaiser Permanente北方加州、Kaiser Permanente南方加州和AYA癌症支持社区（lacunaloft.org）进行。参与者包括23名AYA，28名护理人员和29名临床医生。IV期或复发性癌症。护理优先事项。对23名患者（平均[SD]年龄，29.3 [7.3]岁; 12名男性[52%]; 18名白色参与者[78%]）、28名家庭护理人员（23名女性[82%]; 14名白色参与者[50%]）和29名临床医生（20名女性[69%]; 13名白色参与者[45%]）进行了访谈。护理人员包括22名父母（79%），5名配偶或伴侣（18%）和1名其他家庭成员（4%）; 29名临床医生包括15名医生（52%），6名护士或执业护士（21%）和8名社会工作者或心理学家（28%）。访谈确定了7个临终优先领域：关注身体症状，关注生活质量，心理和精神护理，沟通和决策，与临床医生的关系，护理和治疗，以及独立性。主题在AYA年龄范围和参与者类型中是一致的。虽然有些领域在为成年人制定的质量指标中得到了体现，但确定了独特的领域，以及现有领域的AYA具体表现。例如，生活质量包括整体生活质量;实现生活目标、遗产和意义;支持个人关系;以及常态。在沟通和决策方面，领域包括疾病病程早期的沟通，解决预后和生命结束时的期望，以及AYA在决策中发挥理想作用的机会。护理和治疗领域相关的癌症治疗，使用延长生命的措施，和死亡的位置强调需要偏好的敏感性，而不是一个标准的path. This发现不同于现有的成人指标，建议晚年化疗，强化措施，医院死亡应该是罕见的。这项定性研究的结果表明，患有癌症的AYA在生命结束时有优先照顾的优先事项，这些优先事项没有完全包含在现有的成人指标中。对这一年轻人群使用新指标可能更好地反映以患者和家庭为中心的优质护理体验。这项定性研究评估了患者，家庭和临床医生对青少年和年轻癌症患者临终关怀优先领域的看法。
What do adolescents and young adults with cancer, their families, and clinicians find important in end-of-life care? This qualitative study of interviews with 23 adolescents and young adults, 28 family caregivers, and 29 clinicians identified 7 distinct 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. Although some domains reflected existing quality domains for adults, some domains were unique or had distinct manifestations for this young population. The priority domains identified in this study as relevant to adolescents and young adults with advanced cancer may be used for quality measurement. End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. 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. 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. Stage IV or recurrent cancer. Care priorities. 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. 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. This qualitative study assesses patient, family, and clinician perspectives on priority domains for end-of-life care for adolescents and young adults with cancer.
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影响因子：
8
作者：
Kamihara, Junne;Nyborn, Justin A.;Mack, Jennifer W.
通讯作者：
Mack, Jennifer W.
影响因子：
45.3
作者：
Howell, Della L.;Ward, Kevin C.;Woods, William G.
通讯作者：
Woods, William G.
影响因子：
7.2
作者：
DEGNER, LF;SLOAN, JA
通讯作者：
SLOAN, JA
影响因子：
6.2
作者：
Parsons, Helen M.;Schmidt, Susanne;Harlan, Linda C.;Kent, Erin E.;Lynch, Charles F.;Smith, Ashley W.;Keegan, Theresa H. M.
通讯作者：
Keegan, Theresa H. M.
影响因子：
3.1
作者：
Brand, Sarah R.;Fasciano, Karen;Mack, Jennifer W.
通讯作者：
Mack, Jennifer W.