Mekelenkamp Hilda, van Zanten Herma, de Vries Martine, Lankester Arjan, Smiers Frans
Department of Pediatrics, Willem-Alexander Children's Hospital, Leiden University Medical Centre, Leiden, Netherlands.
Department of Medical Ethics and Health Law, Leiden University Medical Centre, Leiden, Netherlands.
Front Pediatr. 2021 Aug 18;9:690309. doi: 10.3389/fped.2021.690309. eCollection 2021.
Hematopoietic stem cell transplantation decision-making for hemoglobinopathy patients is a complex process, and it remains difficult for health care professionals to decide whether and when a hematopoietic stem cell transplantation should be offered. Gaining insight into health care professionals' considerations is required to understand and optimize this decision-making process. A qualitative interview study using semi-structured interviews with eighteen health care professionals. Data were thematically analyzed. Two main themes emerged from the data: (1) and (2) . The frame of reference, meaning the health care professionals' knowledge and experiences regarding hematopoietic stem cell transplantation, influenced the guided decision-making process. Subsequently, three subthemes evolved from the second theme: (a) weighing up disease severity against possible complications, (b) making an effort to inform, and (c) supporting the best fitting decision for the individual patient. The health care professionals' frame of reference determined the hematopoietic stem cell transplantation decision-making process. This demands reflection on the health care professionals' own frame of reference and its influence on decision-making. Furthermore, reflection on the frame of reference is needed by exchange of knowledge and experiences between referring and referred-to healthcare professionals in an open and two-way direction. The transplantation teams have a responsibility of keeping the frame of reference of their referring colleagues up to date and referring health care professionals should share their feelings regarding hematopoietic stem cell transplantation. To guide patients, a shared decision-making approach is supportive, in which eliciting the patients' preferences is highly important. Health care professionals can refine the decision-making process by guiding patients in eliciting their preferences and including these in the decision.
血红蛋白病患者造血干细胞移植的决策是一个复杂的过程，医疗保健专业人员仍难以决定是否以及何时应提供造血干细胞移植。需要深入了解医疗保健专业人员的考虑因素，以理解和优化这一决策过程。一项定性访谈研究，对18名医疗保健专业人员进行了半结构化访谈。对数据进行了主题分析。数据中出现了两个主要主题：（1）和（2）。参考框架，即医疗保健专业人员关于造血干细胞移植的知识和经验，影响了指导性决策过程。随后，从第二个主题中衍生出三个子主题：（a）权衡疾病严重程度与可能的并发症，（b）努力提供信息，（c）支持为个体患者做出最合适的决策。医疗保健专业人员的参考框架决定了造血干细胞移植的决策过程。这需要反思医疗保健专业人员自身的参考框架及其对决策的影响。此外，需要通过转诊和被转诊的医疗保健专业人员之间开放和双向的知识与经验交流来反思参考框架。移植团队有责任使转诊同事的参考框架保持最新，转诊医疗保健专业人员应分享他们对造血干细胞移植的感受。为了指导患者，共同决策方法是有帮助的，其中了解患者的偏好非常重要。医疗保健专业人员可以通过指导患者了解他们的偏好并将其纳入决策来完善决策过程。
