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

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.

Keywords: Clinical genetics; Exploratory; Patient-reported outcome measures (PROMs); Quality improvement.

Conflict of interest statement

Conflict of Interest

Author A Costal Tirado, Author A McDermott, Author C Thomas, Author D Ferrick, Author J Harris, Author A Edwards, Author M McAllister declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committees on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

Funding

This study was funded by seedcorn funding from Cardiff Business School, Cardiff University (grant number AC2904 3 AM1).

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Source: PubMed

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