Fernstrom Karl M, Shippee Nathan D, Jones Alissa L, Britt Heather R
Division of Applied Research, Allina Health, 2925 Chicago Avenue, Mail Stop #10039, Minneapolis, MN, 55407, USA.
Division of Health Policy and Management, University of Minnesota School of Public Health, 420 Delaware St. SE, D375 Mayo MMC 729, Minneapolis, MN, 55455, USA.
BMC Palliat Care. 2016 Dec 30;15(1):99. doi: 10.1186/s12904-016-0172-x.
Patients with serious chronic illnesses face increasingly complex care and are at risk of poor experience due to a fragmented health system. Most current patient experience tools are not designed to address the unique care aspects of this population and the few that exist are delivered too late in the disease trajectory and are not administered longitudinally which makes them less useful across settings.
We developed a new tool designed to address these gaps. The 25 item scale was tested and refined using randomly cross-validated exploratory and confirmatory factor analyses. Participants were not yet hospice eligible but sick enough to receive benefits of a supportive care approach in the last 2 to 3 years of life. Full information maximum likelihood models were run to confirm the factor structure developed in exploratory analyses. Goodness-of-fit was assessed with the Comparative Fit Index, the Tucker-Lewis Index, and the Root Mean Square Error of Approximation. Test-retest reliability was assessed with the intraclass correlation coefficient and internal consistency of the final scale was examined using Cronbach's alpha.
Exploratory factor analysis revealed three domains - Care Team, Communication, and Care Goals - after removing weak loading and cross loading items. The initial three domain measurement model suggested in the development cohort was tested in the validation cohort and exhibited poor fit X (206) = 565.37, p < 0.001; CFI = 0.879; TLI = 0.864; RMSEA = 0.076. After model respecification, including removing one additional item and allowing paths between theoretically plausible error terms, the final 21 item tool exhibited good fit X (173) = 295.63, p < 0.001; CFI = 0.958; TLI = 0.949; RMSEA = 0.048. Cronbach's alpha revealed high reliability of each domain (Care Team = 0.92, Communication = 0.83, Care Goals = 0.77) and the entire scale (α = 0.91). ICC showed adequate test-retest validity (ICC = 0.58; 95% CI: 0.52-0.65) of the full scale.
When administered earlier in the chronic illness trajectory, a new patient experience scale focused on care teams across settings, communication, and care goals, displayed strong reliability and performed well psychometrically.
This trial ( NCT01746446 ) was registered at ClinicalTrials.gov on November 27, 2012 (retrospectively registered).
患有严重慢性疾病的患者面临着日益复杂的护理，并且由于卫生系统碎片化，他们有体验不佳的风险。当前大多数患者体验工具并非设计用于解决这一人群独特的护理问题，而现有的少数工具在疾病进程中提供得太晚，且未进行纵向管理，这使得它们在不同环境中的作用不大。
我们开发了一种新工具来弥补这些差距。使用随机交叉验证的探索性和验证性因素分析对这个包含25个条目的量表进行了测试和完善。参与者尚未符合临终关怀条件，但病情严重到在生命的最后两到三年能够从支持性护理方法中受益。运行全信息极大似然模型以确认探索性分析中得出的因素结构。使用比较拟合指数、塔克 - 刘易斯指数和近似均方根误差评估拟合优度。使用组内相关系数评估重测信度，并使用克朗巴哈系数检验最终量表的内部一致性。
在去除弱负荷和交叉负荷项目后，探索性因素分析揭示了三个领域——护理团队、沟通和护理目标。在开发队列中提出的初始三领域测量模型在验证队列中进行了测试，结果显示拟合不佳（卡方值(206) = 565.37，p < 0.001；比较拟合指数 = 0.879；塔克 - 刘易斯指数 = 0.864；近似均方根误差 = 0.076）。在模型重新设定后，包括再去除一个项目并允许理论上合理的误差项之间存在路径，最终的21个条目的工具显示出良好的拟合（卡方值(173) = 295.63，p < 0.001；比较拟合指数 = 0.958；塔克 - 刘易斯指数 = 0.949；近似均方根误差 = 0.048）。克朗巴哈系数显示每个领域（护理团队 = 0.92，沟通 = 0.83，护理目标 = 0.77）以及整个量表（α = 0.91）都具有高信度。组内相关系数显示整个量表具有足够的重测效度（组内相关系数 = 0.58；95%置信区间：0.52 - 0.65）。
当在慢性疾病进程中更早使用时，一种关注不同环境下护理团队、沟通和护理目标的新患者体验量表显示出很强的信度，并且在心理测量学上表现良好。
本试验（NCT01746446）于2012年11月27日在ClinicalTrials.gov上注册（追溯注册）。
