Burke Kimberley, Coombes Lucy H, Petruckevitch Ann, Anderson Anna-Karenia
Royal Marsden NHS Foundation Trust, Oak Centre for Children and Young People, Sutton, United Kingdom.
Shooting Star Children's Hospice, Guildford, United Kingdom.
Am J Hosp Palliat Care. 2020 Oct;37(10):837-843. doi: 10.1177/1049909120912674. Epub 2020 Mar 19.
Phase of Illness is used to describe the stages of a patient's illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial (κ = .67) and moderate (κ = .52) inter-rater reliability is demonstrated when categorizing adults; however, there is a lack of similar studies in pediatrics.
To test the inter-rater reliability of health-care professionals when assigning pediatric palliative care patients to a Phase of Illness. Furthermore, to obtain user views on phase definitions, ease of assignment, feasibility and acceptability of use.
A prospective cohort study in which up to 9 health-care professionals' independently allocated 80 pediatric patients to a Phase of Illness and reported on their experiences. This study took place between June and November 2017.
Professionals achieved a moderate level of agreement (κ = 0.50). Kappa values per phase were as follows: stable = 0.63 (substantial), unstable = 0.26 (fair), deteriorating = 0.45 (moderate), and dying = 0.43 (moderate). For the majority of allocations, professionals report that the phase definitions described patients very well (76.1%), and they found it easy to assign patients (73.5%). However, the unstable phase caused the most uncertainty.
The results of this study suggest Phase of Illness is a moderately reliable, acceptable, and feasible tool for use in pediatric palliative care. Current results are similar to those found in some adult studies. However, in a quarter of cases, users report some uncertainty in the application of the tool, and further study is warranted to explore whether suggested refinements improve its psychometric properties.
疾病阶段用于描述姑息治疗环境中患者疾病的阶段。分类基于个体需求、家庭情况和护理计划的充分性。在对成年人进行分类时，显示出较高（κ = 0.67）和中等（κ = 0.52）的评分者间信度；然而，儿科领域缺乏类似的研究。
测试医疗保健专业人员将儿科姑息治疗患者分配到疾病阶段时的评分者间信度。此外，获取用户对阶段定义、分配的简易程度、使用的可行性和可接受性的看法。
一项前瞻性队列研究，其中多达9名医疗保健专业人员独立地将80名儿科患者分配到疾病阶段并报告他们的经验。该研究于2017年6月至11月进行。
专业人员达成了中等程度的一致性（κ = 0.50）。各阶段的kappa值如下：稳定 = 0.63（较高），不稳定 = 0.26（一般），恶化 = 0.45（中等），濒死 = 0.43（中等）。对于大多数分配情况，专业人员报告阶段定义对患者的描述非常准确（76.1%），并且他们发现分配患者很容易（73.5%）。然而，不稳定阶段造成的不确定性最大。
本研究结果表明，疾病阶段是用于儿科姑息治疗的一种中等可靠、可接受且可行的工具。当前结果与一些成人研究的结果相似。然而，在四分之一的案例中，用户报告在工具应用方面存在一些不确定性，有必要进一步研究以探索所建议的改进是否能改善其心理测量特性。
