Outcome measures for clinical genetics services: A comparison of genetics healthcare professionals and patients' views

Katherine Payne, Stuart G. Nicholls, Marion McAllister, Rhona MacLeod, Ian Ellis, Dian Donnai and Linda M. Davies

Health Policy, 2007, vol. 84, issue 1, 112-122

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 representatives; 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 ([chi]2, pÂ

Keywords: Outcome; assessment; Delphi; technique; Medical; genetics (search for similar items in EconPapers)
Date: 2007
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Citations: View citations in EconPapers (4)

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Persistent link: https://EconPapers.repec.org/RePEc:eee:hepoli:v:84:y:2007:i:1:p:112-122

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