Ting Michael Sing Onn, Clarke Angus, McAllister Marion
Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK.
J Genet Couns. 2021 Dec;30(6):1767-1772. doi: 10.1002/jgc4.1429. Epub 2021 May 1.
The Genetic Counseling Outcome Scale (GCOS-24) is a 24-item patient-reported outcome measure (PROM) that was developed to evaluate genetic counseling and testing services by measuring the construct of empowerment. The Genomics Outcome Scale (GOS) is a 6-item version of GCOS-24 that was designed to provide a PROM for use both within and outside clinical genetics services and reduce respondent burden. However, unlike GCOS-24, the sensitivity to change of the GOS has not yet been assessed in appropriate clinical settings. We carried out pre- and post-clinic surveys using the GOS to assess sensitivity to change of the GOS and produce before-and-after GOS data as part of a service evaluation. The survey was sent to patients attending the genetic counseling clinic for a first appointment at the All Wales Medical Genetic Service from 8 April 2019 to 18 September 2019. Patients attending disease management clinics, where genetic issues were not the primary concern, were excluded from this study. A total of 138 respondents were included in the final analysis. The result shows that empowerment scores, measured using the GOS, were significantly higher (p<0.05) after clinic attendance. The GOS shows good sensitivity to change, with a medium-to-large effect size (Cohen's d = 0.73). The result also shows that the service is delivering measurable benefits for its service users.
遗传咨询结果量表(GCOS - 24)是一种由患者报告的包含24个条目的结果测量工具(PROM),旨在通过测量赋权结构来评估遗传咨询和检测服务。基因组学结果量表(GOS)是GCOS - 24的一个包含6个条目的版本,旨在提供一种可在临床遗传学服务内外使用的PROM,并减轻应答者负担。然而,与GCOS - 24不同,GOS在适当临床环境中的变化敏感性尚未得到评估。我们使用GOS进行了临床前和临床后的调查,以评估GOS的变化敏感性,并生成GOS前后数据作为服务评估的一部分。该调查被发送给2019年4月8日至2019年9月18日在全威尔士医学遗传学服务中心首次预约参加遗传咨询门诊的患者。参加疾病管理门诊(遗传问题并非主要关注点)的患者被排除在本研究之外。最终分析共纳入138名应答者。结果显示,使用GOS测量的赋权得分在就诊后显著更高(p<0.05)。GOS显示出良好的变化敏感性,效应大小为中等到较大(科恩d值 = 0.73)。结果还表明,该服务正在为其服务用户带来可衡量的益处。