Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ont.
CMAJ. 2011 Nov 22;183(17):E1252-8. doi: 10.1503/cmaj.110392. Epub 2011 Oct 17.
The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children's quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences.
We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child's quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique.
A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p < 0.0001). The opinions of the physician and child significantly influenced the parents' desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision.
Compared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer.
在姑息化疗（我们研究中定义为静脉内使用细胞毒性药物以达到缓解症状的目的）与单纯支持治疗之间做出选择是儿科肿瘤学中最困难的决策之一，但对于父母和医疗保健专业人员的偏好却知之甚少。我们通过考虑儿童的生活质量和生存时间作为关键属性来比较这些偏好的强度。此外，我们还确定了与报告的偏好相关的因素。
我们将患有无法治愈的癌症的儿童的父母和儿科肿瘤学的医疗保健专业人员纳入研究对象。我们对父母和医疗保健专业人员分别进行了访谈。向受访者展示视觉模拟量表，以说明孩子预期的生活质量水平、预期的生存时间和治愈概率（仅向医疗保健专业人员展示）。然后，受访者被要求在这些基线属性下选择他们更倾向于哪种治疗选择。此外，受访者报告了哪些因素可能影响这样的决策，并按重要性对所有确定的因素进行了排序。主要衡量标准是使用阈值技术获得的单纯支持治疗相对于姑息化疗的期望得分。
共有 77 名父母和 128 名医疗保健专业人员参加了我们的研究。影响治疗方案选择的重要因素是父母和医疗保健专业人员都认为儿童的生活质量和生存时间。希望对父母来说尤其重要。与医疗保健专业人员相比，父母明显更倾向于化疗（77 名中的 42 名，54.5%）（128 名中的 20 名，15.6%；p<0.0001）。医生和孩子的意见对父母对支持治疗的渴望有重大影响；对于医疗保健专业人员，父母和孩子的意见是影响这一决策的重要因素。
与医疗保健专业人员相比，父母在姑息治疗阶段更强烈地倾向于采用积极的治疗方法，并将希望视为做出治疗决策的更重要因素。了解父母和医疗保健专业人员在单纯支持治疗的相对可取性方面的差异，可能有助于沟通，并改善癌症儿童的临终关怀。
