title: Using Patient-Reported Outcome Measures for Quality Improvement in Clinical Genetics: an Exploratory Study.
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.
authors.affiliation: Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK.|University of Barcelona, Barcelona, Spain.
authors.forename: A
authors.initials: A
authors.lastname: Costal Tirado
authors.affiliation: Cardiff Business School, Cardiff University, Cardiff, UK.
authors.forename: A M
authors.initials: AM
authors.lastname: McDermott
authors.affiliation: Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK.
authors.forename: C
authors.initials: C
authors.lastname: Thomas
authors.affiliation: Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK.
authors.forename: D
authors.initials: D
authors.lastname: Ferrick
authors.affiliation: Cardiff & Vale University Health Board, Cardiff, UK.
authors.forename: J
authors.initials: J
authors.lastname: Harris
authors.affiliation: Cardiff & Vale University Health Board, Cardiff, UK.
authors.forename: A
authors.initials: A
authors.lastname: Edwards
authors.affiliation: Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK. mcallistermf@cf.ac.uk.|Cardiff & Vale University Health Board, Cardiff, UK. mcallistermf@cf.ac.uk.
authors.forename: Marion
authors.identifier: http://orcid.org/0000-0001-7188-9255
authors.initials: M
authors.lastname: McAllister
mesh_terms: D005817:Genetic Counseling / Q000458:organization & administration*; D005820:Genetic Testing; D006801:Humans; D000071066:Patient Reported Outcome Measures; D018802:Patient-Centered Care / Q000458:organization & administration; D058996:Quality Improvement / Q000458:organization & administration*; D011788:Quality of Life
keywords: Clinical genetics; Exploratory; Patient-reported outcome measures (PROMs); Quality improvement