Carlton J, Peasgood T, Khan S, Barber R, Bostock J, Keetharuth A D
University of Sheffield, Regent Court, 30 Regent Street, Sheffield, S1 4DA, UK.
University of Cambridge, Cambridge, UK.
J Patient Rep Outcomes. 2020 Jan 13;4(1):4. doi: 10.1186/s41687-019-0172-8.
Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients' subjective assessments of their symptoms and functional status and also their quality of life. Whilst the importance of involving the public in PROM development to increase the quality of the developed PROM has been highlighted this practice is not widespread. There is a lack of guidance on how public involvement (PI) could be embedded in the development of PROMs, where the roles can be more complex than in other types of research. This paper provides a timely review and sets out an emerging framework for fully incorporating PI into PROM development.
患者报告的结局指标（PROMs）在英国及国际上被广泛用于报告和监测患者对其症状、功能状态以及生活质量的主观评估。虽然让公众参与PROMs的开发以提高所开发PROMs的质量的重要性已得到强调，但这种做法并不普遍。关于如何将公众参与（PI）纳入PROMs的开发，缺乏相关指导，因为在PROMs开发中，相关角色可能比其他类型的研究更为复杂。本文及时进行了综述，并提出了一个将PI全面纳入PROMs开发的新框架。
