Wolfe J, Klar N, Grier H E, Duncan J, Salem-Schatz S, Emanuel E J, Weeks J C
Center for Outcomes and Policy Research and Department of Pediatric Oncology, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115, USA.
JAMA. 2000 Nov 15;284(19):2469-75. doi: 10.1001/jama.284.19.2469.
Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.
To evaluate parental understanding of prognosis in children who die of cancer and to assess the association of this factor with treatment goals and the palliative care received by children.
DESIGN, SETTING, AND PARTICIPANTS: Survey, conducted between September 1997 and August 1998, of 103 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, and who died of cancer between 1990 and 1997 (72% of those eligible and those located) and 42 pediatric oncologists.
Timing of parental understanding that the child had no realistic chance for cure compared with the timing of physician understanding of this prognosis, as documented in the medical record.
Parents first recognized that the child had no realistic chance for cure a mean (SD) of 106 (150) days before the child's death, while physician recognition occurred earlier at 206 (330) days before death. Among children who died of progressive disease, the group characterized by earlier recognition of this prognosis by both parents and physicians had earlier discussions of hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P =.01), better parental ratings of the quality of home care (OR, 3.31; 95% CI, 1.15-9.54; P =.03), earlier institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P =.02), less use of cancer-directed therapy during the last month of life (OR, 2.80; 95% CI, 1.05-7.50; P =.04), and higher likelihood that the goal of cancer-directed therapy identified by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P =.002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P =.01 for parents).
Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care. JAMA. 2000;284:2469-2475.
父母对于死于癌症的儿童的预后理解或姑息治疗决策在很大程度上尚不明确。然而，对预后更准确的理解可能会改变治疗目标和期望，并带来更有效的护理。
评估父母对死于癌症儿童的预后理解，并评估该因素与治疗目标以及儿童接受的姑息治疗之间的关联。
设计、场所和参与者：1997年9月至1998年8月对103名在马萨诸塞州波士顿的达纳-法伯癌症研究所和儿童医院接受治疗且于1990年至1997年间死于癌症的儿童的父母（符合条件且能联系到的72%）以及42名儿科肿瘤学家进行的调查。
与医生在病历中记录的对该预后的理解时间相比，父母首次认识到孩子没有治愈的现实可能性的时间。
父母首次认识到孩子没有治愈的现实可能性平均（标准差）在孩子死亡前106（150）天，而医生的认识更早，在死亡前206（330）天。在死于疾病进展的儿童中，父母和医生都更早认识到该预后的组有更早关于临终关怀的讨论（优势比[OR]，1.03；95%置信区间[CI]，1.01 - 1.06；P = 0.01），父母对家庭护理质量的评分更高（OR，3.31；95% CI，1.15 - 9.54；P = 0.03），更早下达不进行心肺复苏的医嘱（OR，1.03；95% CI，1.00 - 1.06；P = 0.02），在生命最后一个月较少使用针对癌症的治疗（OR，2.80；95% CI，1.05 - 7.50；P = 0.04），并且医生和父母确定的针对癌症的治疗目标是减轻痛苦的可能性更高（医生的OR，5.17；95% CI，1.86 - 14.4；P = 0.002；父母的OR，6.56；95% CI，1.54 - 27.86；P = 0.01）。
父母认识到孩子没有治愈的现实可能性存在相当大的延迟，但医生和父母更早认识到该预后与更加强调旨在减轻痛苦的治疗以及更大程度地整合姑息治疗相关。《美国医学会杂志》。2000年；284:2469 - 2475。
