Abstract

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.

Highlights

  • Patient-­reported outcome measu (PROM) are increasingly implemented in healthcare systems to evaluate the effectiveness and quality of care (Meadows, 2011)

  • What is known about this topic The Genomics Outcome Scale (GOS) is a six-­item questionnaire that was designed as a shorter version of GCOS-­24 to provide a PROM that can be used both within and outside of clinical genetics services and reduce respondent burden

  • This study aims to (a) assess sensitivity to change of GOS and (b) provide before-­and-­after GOS data to the NHS All Wales Medical Genetics Service (AWMGS) as part of a service evaluation

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Summary

Introduction

Patient-­reported outcome measu (PROM) are increasingly implemented in healthcare systems to evaluate the effectiveness and quality of care (Meadows, 2011). What is known about this topic The Genomics Outcome Scale (GOS) is a six-­item questionnaire that was designed as a shorter version of GCOS-­24 to provide a PROM that can be used both within and outside of clinical genetics services and reduce respondent burden. The Genomics Outcome Scale (GOS) was designed as a shorter version of GCOS-­24 to provide a PROM that can be used both within and outside of clinical genetics services and reduce respondent burden (Grant et al, 2019).

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