Groeneveld I F, Goossens P H, van Meijeren-Pont W, Arwert H J, Meesters J J L, Rambaran Mishre A D, Van Vree F, Vliet Vlieland T P M
Rijnlands Rehabilitation Centre, Leiden, The Netherlands; Sophia Rehabilitation Centre, The Hague, The Netherlands; Department of Orthopaedics, Leiden University Medical Center, Rehabilitation, and Physical Therapy, Leiden, The Netherlands.
Rijnlands Rehabilitation Centre, Leiden, The Netherlands; Sophia Rehabilitation Centre, The Hague, The Netherlands; Department of Orthopaedics, Leiden University Medical Center, Rehabilitation, and Physical Therapy, Leiden, The Netherlands.
J Stroke Cerebrovasc Dis. 2019 Feb;28(2):499-512. doi: 10.1016/j.jstrokecerebrovasdis.2018.10.033. Epub 2018 Nov 30.
Structured application of patient-reported outcome measures (PROMs) is a key element in Value Based Healthcare. This study aimed to evaluate the feasibility of a broad set of PROMs reflecting similar patient reported health domains as proposed within the International Standard Set of Patient-Centered Outcome Measures After Stroke within the first year after stroke.
The study included consecutive stroke patients admitted to inpatient or outpatient specialized rehabilitation. PROMs were administered upon admission, discharge (inpatients only), and at 3, 6, and 12 months. PROMs included: EuroQol 5 Dimensions (EQ-5D), Stroke Impact Scale (SIS), Stroke and Aphasia Quality of Life Scale (SAQOL-39NL), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P), Hospital Anxiety and Depression Scale (HADS), and Fatigue Severity Scale (FSS). Feasibility was defined as participation, retention, and response rates. Paired t tests were conducted to analyze their changes over time.
Of 485 inpatients and 189 outpatients who were invited, 291 (60.0%) and 82 (43.3%) participated, of whom 45 (15.5%) and 7 (8.5%) dropped out before 12 months, respectively. Two hundred seven (71.1%) and 71 (86.6%) of the inpatients and outpatients returned the questionnaires on all or all but one time points, respectively. Between admission and 12 months statistically significant improvements of PROMs addressing general health and quality of life (EQ-5D), psychiatric functioning (HADS), motor functioning (SIS mobility), and social functioning (USER-P, SIS communication) were seen. The SIS memory scale, the SAQOL-39NL and the FSS did not show any changes.
Participation, retention, and response rates for a comprehensive set of PROMS for stroke in patients in rehabilitation were moderate to good, with clinical improvements seen until 1 year post stroke. The SAQOL-39NL and FSS did not demonstrate changes over time and cannot be recommended for repetitive measurements in this setting. By simplifying the set of questionnaires, participation and response rates may be further enhanced.
患者报告结局量表（PROMs）的结构化应用是基于价值的医疗保健的关键要素。本研究旨在评估一系列广泛的PROMs在卒中后第一年反映与国际卒中患者中心结局指标标准集中所提议的类似患者报告健康领域的可行性。
该研究纳入了连续入住住院或门诊专科康复机构的卒中患者。在入院时、出院时（仅适用于住院患者）以及3个月、6个月和12个月时进行PROMs评估。PROMs包括：欧洲五维健康量表（EQ-5D）、卒中影响量表（SIS）、卒中与失语症生活质量量表（SAQOL-39NL）、乌得勒支康复参与评估量表（USER-P）、医院焦虑抑郁量表（HADS）和疲劳严重程度量表（FSS）。可行性定义为参与率、保留率和应答率。采用配对t检验分析其随时间的变化。
在485名住院患者和189名门诊患者被邀请参与研究，分别有291名（60.0%）和82名（43.3%）参与，其中分别有45名（15.5%）和7名（8.5%）在12个月前退出。分别有207名（71.1%）住院患者和71名（86.6%）门诊患者在所有或除一个时间点外的所有时间点返还了问卷。在入院至12个月期间，在总体健康和生活质量（EQ-5D）、精神功能（HADS）、运动功能（SIS移动性）和社会功能（USER-P、SIS沟通）方面的PROMs有统计学意义的改善。SIS记忆量表、SAQOL-39NL和FSS未显示任何变化。
康复中的卒中患者使用一套综合PROMs的参与率、保留率和应答率为中等至良好，直至卒中后1年可见临床改善。SAQOL-39NL和FSS未显示随时间的变化，因此不推荐在此环境中进行重复测量。通过简化问卷集，参与率和应答率可能会进一步提高。
