Health Policy 84 (2007) 112–122 Outcome measures for clinical genetics services: A comparison of genetics healthcare professionals and patients’ views Katherine Payne a,b,* , Stuart G. Nicholls a,b , Marion McAllister a,c , Rhona MacLeod c,b , Ian Ellis d,e,a , Dian Donnai c,b , Linda M. Davies b a The North West Genetics Knowledge Park (NOWGEN), Manchester, UK b The University of Manchester, Manchester, UK c Central Manchester and Manchester Childrens’ University Hospitals NHS Trust, Manchester, UK d Cheshire and Merseyside Clinical Genetics Service, Royal Liverpool Children’s NHS Trust Alder Hey Hospital, Liverpool, UK e University of Liverpool, Liverpool, UK Abstract Objectives: To explore genetics professionals’ and patients’ views about which outcome domains are most appropriate to measure the patient benefits of using a clinical genetics service. Methods: A postal Delphi survey was sent to: 115 consultant geneticists; 162 genetic counsellors; 156 support group represen- tatives; 106 patients. The survey contained 19 outcome domains and respondents assessed the usefulness of each for clinical genetics services. Results: The final professional panel comprised 115 genetics healthcare professionals and the patient panel comprised 72 patients. The outcome domains that achieved consensus (at least 75% of panel rated ‘useful’) for the patient and professional panels were: decision-making; knowledge of the genetic condition; perceived personal control; risk perception; satisfaction; meeting expectations; ability to cope; diagnosis accuracy; quality of life. Comparison of the ratings between the professional panel and the patient panel showed there was no statistical difference (χ 2 , p < 0.01) between the ratings (‘useful’ compared to ‘not useful’) for 14 of the 19 outcome domains but found differences for the perceived usefulness of: level of depression; health status; spiritual well-being; test accuracy; rate of termination. Conclusions: This Delphi survey identified nine outcome domains which are good starting points to develop a core set of outcome measures for evaluating clinical genetics services. © 2007 Elsevier Ireland Ltd. All rights reserved. Keywords: Outcome assessment; Delphi technique; Medical genetics * Corresponding author at: The North West Genetics Knowledge Park, The NOWGEN Centre, 29 Grafton Street, Manchester M13 9WU, UK. Tel.: +44 161 276 8979; fax: +44 161 276 4058. E-mail addresses: Katherine.payne@manchester.ac.uk (K. Payne), stuart.g.nicholls@manchester.ac.uk (S.G. Nicholls), marion.mcallister@cmmc.nhs.uk (M. McAllister), rhona.macleod@cmmc.nhs.uk (R. MacLeod), ian.ellis@rlc.nhs.uk (I. Ellis), dian.donnai@cmmc.nhs.uk (D. Donnai), linda.m.davies@manchester.ac.uk (L.M. Davies). 0168-8510/$ – see front matter © 2007 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2007.03.005