Division of Hematology/Oncology, Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri.
Section of Pediatric Palliative Care, Texas Children's Hospital, Houston, Texas.
J Palliat Med. 2020 Feb;23(2):192-197. doi: 10.1089/jpm.2019.0178. Epub 2019 Aug 13.
Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology. To determine whether parental decision-making preferences and experiences vary by race/ethnicity. Questionnaire-based cohort study. Three hundred sixty five parents of children with cancer and their oncologists at two academic centers. Parents reported on preferred and actual decision-making roles. Associations between race/ethnicity and decision-making outcomes determined by chi-squared test. Most parents preferred shared decision making (235/368, 64%), whereas 23% (84/368) preferred parent-led decision making and 13% (49/368) preferred oncologist-led decision making. Parental decision-making preferences did not differ by race/ethnicity ( = 0.38, chi-squared test). However, the actual role parents played in decision making differed by parental race/ethnicity, with 25% (71/290) of white parents reporting parent-led decision making, versus 37% (9/24) of black parents, 48% (13/27) of Hispanic parents, and 56% (15/27) of Asian/other parents ( = 0.005, chi-squared test). Oncologists accurately predicted parental preferences for decision making 49% of the time ( = 165/338), but accuracy also differed by race and ethnicity. Oncologists accurately predicted parental preferences for 53% of white parents (140/266), 23% of black parents (5/22), 37% of Hispanic parents (10/27), and 43% of Asian/other race parents (10/23) ( = 0.026, chi-squared test). Minority parents held more active roles than white parents, and oncologists had more difficulty predicting decisional preferences for minority parents relative to white parents. These findings suggest that minority parents are at risk of inferior decision-making experiences.
先前在成人肿瘤学领域的研究表明，少数族裔患者的决策参与程度低于预期。然而，很少有研究探讨儿科肿瘤学中少数族裔父母的决策经验。为了确定父母的决策偏好和经验是否因种族/民族而异。基于问卷的队列研究。在两个学术中心的 365 名癌症患儿的父母及其肿瘤学家。父母报告了他们的首选和实际决策角色。通过卡方检验确定种族/民族与决策结果之间的关联。大多数父母更喜欢共同决策（235/368，64%），而 23%（84/368）更喜欢家长主导的决策，13%（49/368）更喜欢肿瘤学家主导的决策。父母的决策偏好与种族/民族无关（=0.38，卡方检验）。然而，父母在决策中的实际角色因父母的种族/民族而异，25%（71/290）的白人父母报告家长主导的决策，而黑人父母为 37%（9/24），西班牙裔父母为 48%（13/27），亚裔/其他族裔父母为 56%（15/27）（=0.005，卡方检验）。肿瘤学家准确预测父母对决策的偏好 49%的时间（=165/338），但准确性也因种族和民族而异。肿瘤学家准确预测了 53%的白人父母（140/266）、23%的黑人父母（5/22）、37%的西班牙裔父母（10/27）和 43%的亚裔/其他族裔父母（10/23）的决策偏好（=0.026，卡方检验）。少数族裔父母比白人父母更积极地参与决策，而肿瘤学家在预测少数族裔父母的决策偏好方面比白人父母更困难。这些发现表明，少数族裔父母面临着较差的决策体验风险。
