Higginson Irene J, Simon Steffen T, Benalia Hamid, Downing Julia, Daveson Barbara A, Harding Richard, Bausewein Claudia
King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK.
BMJ Support Palliat Care. 2012 Mar;2(1):36-42. doi: 10.1136/bmjspcare-2011-000061. Epub 2012 Jan 4.
To evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care.
Online survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS).
The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians.
In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs).
评估临床医生和研究人员对其使用结局指标的看法，以及在姑息治疗和临终关怀中哪些问题最为重要。
通过国家和国际协会及数据库，对欧洲和非洲从事姑息治疗临床护理、临床审计和研究的专业人员进行在线调查。问题集中在使用的指标、原因，以及在两种常用的多维指标——姑息治疗结局量表（POS）和支持团队评估表（STAS）中哪些问题很重要。
总体完成率为59%（392/663）。超过四分之一的受访者在临床实践中常用三种结局指标，超过十分之一的受访者在研究中常用：卡氏功能状态量表（KPS），其次是埃德蒙顿症状评估量表（ESAS）和POS。这些指标在临床实践中的使用频率是研究中的两倍。主要用途相似：评估患者的症状/需求（分别为POS和STAS使用者的88%和85%）、监测变化（62%，58%）、评估护理（61%，48%）和评估家庭需求（59%，60%）。受访者将最重要的问题评为疼痛、症状、情感和家庭方面。医生和护士之间或研究人员与临床医生之间在最重要问题的选择上没有差异。
在姑息治疗中，临床实践中常用的结局指标在研究中也经常被使用。在姑息治疗患者报告结局指标（PROMs）中，与疼痛、症状、情感需求和家庭关切相关的问题一直被认为是最有用和最重要的。
