Costal Tirado A, McDermott A M, Thomas C, Ferrick D, Harris J, Edwards A, McAllister Marion
Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK.
University of Barcelona, Barcelona, Spain.
J Genet Couns. 2017 Oct;26(5):1017-1028. doi: 10.1007/s10897-017-0079-6. Epub 2017 Mar 9.
International advocacy of patient-centred healthcare delivery has led to emphasis on the (re)design and evaluation of healthcare processes and outcomes from a patient perspective. Patient-reported outcome measures (PROMs) have significant potential to inform such attempts. However there is limited understanding of the processes by which this can be achieved. This exploratory study followed attempts to utilise two different PROMs measures to support service quality improvement in clinical genetics. PROMs used were the Genetic Counseling Outcome Scale (GCOS-24), a well-validated clinical genetics-specific PROM and Euroqol (EQ-5D), a generic PROM favoured by the UK National Institute for Health and Excellence (NICE). Both of these PROMs enable pre/post intervention comparison. A service audit tool was also used, premised on a patient-reported experience measure. In addition, the study draws on interviews with clinical staff to identify challenges associated with the use of PROMs (response rate, data collection, analysis). Benefits are also explored and include the provision of insight into patients' needs; complementing clinical judgement; identification of needs being met, evidencing the benefit of services provided; prompting consideration of areas requiring attention; and encouraging professional development.
以患者为中心的医疗服务提供方式在国际上得到倡导，这使得人们开始从患者角度重视医疗过程和结果的（重新）设计与评估。患者报告结局指标（PROMs）在为这类尝试提供信息方面具有巨大潜力。然而，对于实现这一目标的过程，人们的了解有限。这项探索性研究跟踪了利用两种不同的PROMs指标来支持临床遗传学服务质量改进的尝试。所使用的PROMs分别是遗传咨询结局量表（GCOS - 24），这是一种经过充分验证的针对临床遗传学的PROM，以及欧洲五维度健康量表（EQ - 5D），这是英国国家卫生与临床优化研究所（NICE）青睐的一种通用PROM。这两种PROMs都能进行干预前后的比较。还使用了一种基于患者报告体验指标的服务审计工具。此外，该研究还通过对临床工作人员的访谈来确定与使用PROMs相关的挑战（回复率、数据收集、分析）。同时也探讨了其益处，包括深入了解患者需求；补充临床判断；确定需求是否得到满足，证明所提供服务的益处；促使考虑需要关注的领域；以及鼓励专业发展。
