Centers for Translational Science, Children’s National Medical Center, Washington, DC 20010, USA.
JAMA Pediatr. 2013 May;167(5):460-7. doi: 10.1001/jamapediatrics.2013.943.
Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied.
To examine the efficacy of family-centered ACP.
Two-group randomized controlled trial in a pediatric oncology program.
Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012.
Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information.
Statement of treatment preferences and Decisional Conflict Scale score.
The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 ("treatment would extend my life by not more than 2 to 3 months"), intervention dyads demonstrated higher congruence (κ = 0.660; P < .001) vs control dyads (κ = -0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation.
Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.
预先医疗指示（ACP）为患者及其家属准备未来的医疗决策；然而，青少年肿瘤患者参与 ACP 的需求尚未得到充分研究。
检验以家庭为中心的 ACP 的疗效。
儿科肿瘤项目中的 2 组随机对照试验。
2011 年 1 月 17 日至 2012 年 3 月 29 日期间，招募了 60 名年龄在 14 至 21 岁之间患有癌症的青少年及其代理人或家属参与该研究。
30 对接受了间隔 1 周的 3 至 60 分钟的会议。干预组完成了：（1）里昂家庭为中心的 ACP 调查，（2）尊重选择访谈，以及（3）五个愿望。对照组接受标准护理加信息。
治疗偏好声明和决策冲突量表评分。
青少年的平均年龄为 16 岁；36 名（60%）为男性，30 名（50%）为白人，26 名（43%）为黑人，4 名（7%）为亚洲人。诊断如下：白血病（14 名患者[47%]）、脑肿瘤（8 名[27%]）、实体瘤（6 名[20%]）和淋巴瘤（2 名[7%]）。与对照组相比，干预组在 6 种疾病特定情况下的 4 种情况下表现出更高的一致性；例如，对于情况 2（“治疗不会延长我的生命超过 2 至 3 个月”），干预组表现出更高的一致性（κ = 0.660；P<.001），而对照组（κ = -0.0636；P =.70）。干预青少年（100%）希望他们的家人在当时尽善尽美，而较少的对照组青少年（62%）给予家人这种回旋余地。干预青少年对临终决策的了解明显更好（t = 2.93；效应量，0.961；95%CI，0.742-1.180；P =.007）。干预家庭比对照组更有可能就限制治疗达成一致。仅在一种情况下发现了种族差异。
预先医疗指示使家庭能够理解并尊重青少年的意愿。干预组比对照组更有可能限制治疗。有需要的非裔美国家庭愿意参与。
