Variation in healthcare services for specialist genetic testing and implications for planning genetic services: the exam
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ORIGINAL ARTICLE
Variation in healthcare services for specialist genetic testing and implications for planning genetic services: the example of inherited retinal dystrophy in the English NHS Mark Harrison & Stephen Birch & Martin Eden & Simon Ramsden & Tracey Farragher & Katherine Payne & Georgina Hall & Graeme CM Black
Received: 8 July 2014 / Accepted: 17 December 2014 # Springer-Verlag Berlin Heidelberg 2015
Abstract This study aims to identify and quantify the extent of current variation in service provision of a genetic testing service for dominant and X-linked retinal dystrophies in the English National Health Service (NHS). National audit data (all test requests and results (n=1839) issued between 2003 and 2011) and survey of English regional genetic testing services were used. Age- and gender-adjusted standardised testing rates were calculated using indirect standardisation, and survey responses were transcribed verbatim and data collated and summarised. The cumulative incidence rate of testing in England was 4.5 per 100,000 population for males and 2.6 per 100,000 population for females. The standardised testing rate (STR) varied widely between regions of England, being particularly low in the North-east (STR 0.485), with half as many tests as expected based on the size and demographic distribution of the population and high in the South-east (STR 1.355), with 36 % more tests than expected. Substantial and significantly different rates of testing were found between
regional populations. Specific policy mechanisms to promote, monitor and evaluate the regional distribution of access to genetic and genomic testing are required. However, commissioners will require information on the scope and role of genetic services and the population at risk of the conditions for which patients are tested. Keywords Health services accessibility . Health services needs and demand . Genetic testing . Genetic services . Health planning
Introduction Geographic variations in healthcare provision are ubiquitous and are observed for interventions for both common and rare disorders (Appleby et al. 2011). Although genetic testing is set
Electronic supplementary material The online version of this article (doi:10.1007/s12687-014-0210-4) contains supplementary material, which is available to authorized users. M. Harrison : S. Birch : M. Eden : K. Payne Manchester Centre for Health Economics, Institute of Population Health, Faculty of Medical and Human Sciences, MAHSC, The University of Manchester, Manchester, UK M. Harrison Faculty of Pharmaceutical Sciences, University of British Columbia, Vancouver, BC, Canada M. Harrison Centre for Health Evaluation and Outcome Sciences, St Paul’s Hospital, Vancouver, BC, Canada S. Birch Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Ontario, Canada
S. Ramsden : G. Hall : G. Black (*) Centre for Genomic Medicine, Central Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Sciences Centre (MAHSC), The University of Manchester, Manche
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