School of Nursing, Bouvé College of Health Sciences, Northeastern University, Boston, MA, United States of America; Department of Neurology, Boston Children's Hospital, Boston, MA, United States of America.
Albany Medical College, Albany, NY, United States of America.
J Pediatr Nurs. 2021 Nov-Dec;61:404-409. doi: 10.1016/j.pedn.2021.09.008. Epub 2021 Oct 13.
Deciding on a disease modifying therapy (DMT) for the treatment of pediatric onset multiple sclerosis (POMS) often presents a challenge to families. Parents are often overwhelmed by DMT choices, but they desire to be an integral part of the decision making process for their child. There is no standard approach for how best to involve families in this process. The aim of this study was to describe the experience of decision making related to the use of disease modifying therapy in parents of children and adolescents with POMS.
The research aim was addressed using a descriptive survey design. Participants were recruited from the Pediatric MS and Related Disorders Program at Boston Children's Hospital as well as from the Pediatric Multiple Sclerosis Alliance online Facebook group.
Overall, fewer than half of parents felt very satisfied with the DMT they chose for their child with POMS (44%). Parental satisfaction with the decision making process increased with a high level of control of the process (p < 0.0001), satisfaction with communication (p < 0.0001), and feeling supported by the healthcare provider (p < 0.0001).
Healthcare providers should recognize the importance of the role of the family in the decision making process and how this directly impacts health outcomes. An open discussion at the time of DMT education should involve identification of family values and preferences. The use of online decision support tools have a valuable role in determining family preferences.
There is an opportunity of healthcare providers to foster shared decision making practices to improve satisfaction among parents of children and adolescents with POMS. Healthcare providers should work closely with families to identify and incorporate their personal preferences for their role in the decision making process. Future research should include the testing of decision support tools for decision making in POMS.
为儿科多发性硬化症 (POMS) 患者选择疾病修正治疗 (DMT) 常常令家属感到困扰。家长通常会被 DMT 的选择所淹没，但他们希望能作为孩子决策过程的重要组成部分。目前还没有标准的方法可以让家属最好地参与这一过程。本研究旨在描述父母在为患有 POMS 的儿童和青少年使用疾病修正治疗的决策过程中的体验。
该研究采用描述性调查设计。参与者来自波士顿儿童医院儿科多发性硬化症和相关疾病项目以及儿科多发性硬化症联盟的在线 Facebook 群组招募。
总体而言，不到一半的父母对他们为患有 POMS 的孩子选择的 DMT 非常满意 (44%)。父母对决策过程的满意度随着对过程的控制程度提高而增加 (p<0.0001)，对沟通的满意度 (p<0.0001) 和得到医疗保健提供者的支持的满意度 (p<0.0001) 也有所提高。
医疗保健提供者应认识到家庭在决策过程中的重要作用，以及这如何直接影响健康结果。在进行 DMT 教育时，应进行一次公开讨论，包括确定家庭的价值观和偏好。在线决策支持工具的使用在确定家庭偏好方面具有重要作用。
医疗保健提供者有机会培养共同决策实践，以提高患有 POMS 的儿童和青少年的父母满意度。医疗保健提供者应与家庭密切合作，确定并纳入他们在决策过程中个人偏好。未来的研究应包括测试决策支持工具在 POMS 决策中的应用。
