Department of Pediatrics, Yale School of Medicine, New Haven, CT.
Yale Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, New Haven, CT.
JCO Oncol Pract. 2022 Mar;18(3):e372-e382. doi: 10.1200/OP.21.00447. Epub 2021 Oct 6.
There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures.
We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8.
Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible.
Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.
目前尚无用于优化癌症儿童临终关怀的质量指标（QMs）。此前，我们开发了一组 26 项候选 QMs。我们在这项研究中的主要目标是在利益相关者中达成优先措施的共识。
我们采用改良 Delphi 法进行了一项迭代的、横断面的电子调查，以在临床医生和家庭利益相关者中建立共识。在两轮调查中，利益相关者均被要求根据感知的重要性对 QMs 进行 9 分制的 Likert 评分。卫生保健专业人员还被要求根据可操作性对措施进行评分。每轮之后，我们根据重要性和可衡量性的中位数评分保留 QMs，保留中位数重要性评分≥8 的 QMs。
25 名参与者完成了两轮调查。在第一轮中，参与者被要求对 26 项 QMs 进行评分；由于中位数重要性评分<8，有 9 项 QMs（包括与医疗保健使用相关的 QMs）被删除。根据参与者的反馈，第二轮提出了两项新的措施供考虑。经过第二轮，最终保留了 17 项 QMs。与症状筛查和姑息治疗咨询相关的 QMs 在重要性和可行性方面评分较高。与沟通相关的 QMs 被认为非常重要，但可行性较低。衡量患者的需求是否被他们的医疗团队听到被评为最不可行的措施之一。
儿童癌症利益相关者优先考虑与患者报告结果相关的 QMs，认为衡量医疗保健资源使用的措施不那么重要。未来的研究应寻求开发用于质量评估的新工具，以提高优先措施的可行性。
