Using Patient-Reported Outcome Measures for Quality Improvement in Clinical Genetics: an Exploratory Study

A. Costal Tirado, A. M. McDermott, C. Thomas, D. Ferrick, J. Harris, A. Edwards, Marion McAllister*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)1017-1028
Number of pages12
JournalJournal of Genetic Counseling
Volume26
Issue number5
Early online date9 Mar 2017
DOIs
Publication statusPublished - 1 Oct 2017

Keywords

  • Clinical genetics
  • Exploratory
  • Patient-reported outcome measures (PROMs)
  • Quality improvement

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