1 Department of Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco , San Francisco, California.
2 Department of Cardiology, Boston Children's Hospital , Boston, Massachusetts.
J Palliat Med. 2018 Jun;21(6):773-779. doi: 10.1089/jpm.2017.0612. Epub 2018 Feb 7.
While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease.
To compare the perspectives of PPC physicians and pediatric cardiologists regarding palliative care in pediatric heart disease.
Cross-sectional web-based surveys.
Responses from 183 pediatric cardiologists were compared to those of 49 PPC physicians (response rates 31% [183/589] and 28% [49/175], respectively). Forty-eight percent of PPC physicians and 63% of pediatric cardiologists agreed that availability of PPC is adequate (p = 0.028). The majority of both groups indicated that PPC consultation occurs "too late." Compared with pediatric cardiologists, PPC physicians reported greater competence in all areas of advance care planning, communication, and symptom management. PPC physicians more often described obstacles to PPC consultation as "many" or "numerous" (42% vs. 7%, p < 0.001). PPC physicians overestimated how much pediatric cardiologists worry about PPC introducing inconsistency in approach (60% vs. 11%, p < 0.001), perceive lack of added value from PPC (30% vs. 7%, p < 0.001), believe that PPC involvement will undermine parental hope (65% vs. 44%, p = 0.003), and perceive that PPC is poorly accepted by parents (53% vs. 27%, p < 0.001).
There are significant differences between pediatric cardiologists and PPC physicians in perception of palliative care involvement and perceived barriers to PPC consultation. An intervention that targets communication and exchange of expertise between PPC and pediatric cardiology could improve care for children with heart disease.
虽然儿童生命威胁性疾病的儿科舒缓治疗（PPC）的重要性日益受到重视，但对于儿科心脏病学中儿童舒缓治疗的态度知之甚少。
比较 PPC 医生和儿科心脏病专家对儿科心脏病舒缓治疗的看法。
横断面网络调查。
比较了 183 名儿科心脏病专家和 49 名 PPC 医生的回复（回复率分别为 31%[183/589]和 28%[49/175]）。48%的 PPC 医生和 63%的儿科心脏病专家认为 PPC 的可用性足够（p=0.028）。大多数儿科心脏病专家和 PPC 医生都表示 PPC 咨询发生得“太晚”。与儿科心脏病专家相比，PPC 医生在所有预先医疗计划、沟通和症状管理领域都表现出更强的能力。PPC 医生更常将 PPC 咨询的障碍描述为“很多”或“很多”（42%对 7%，p<0.001）。PPC 医生高估了儿科心脏病专家对 PPC 引入方法不一致的担忧程度（60%对 11%，p<0.001），认为 PPC 没有增加价值（30%对 7%，p<0.001），认为 PPC 参与会破坏父母的希望（65%对 44%，p=0.003），并认为 PPC 不受父母欢迎（53%对 27%，p<0.001）。
儿科心脏病专家和 PPC 医生在对参与 PPC 的看法和对 PPC 咨询的障碍的看法上存在显著差异。一项针对 PPC 和儿科心脏病学之间的沟通和专业知识交流的干预措施可以改善心脏病儿童的护理。
