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

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

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

Suggested Citation

  • Payne, Katherine & Nicholls, Stuart G. & McAllister, Marion & MacLeod, Rhona & Ellis, Ian & Donnai, Dian & Davies, Linda M., 2007. "Outcome measures for clinical genetics services: A comparison of genetics healthcare professionals and patients' views," Health Policy, Elsevier, vol. 84(1), pages 112-122, November.
    • Handle: RePEc:eee:hepoli:v:84:y:2007:i:1:p:112-122
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    References listed on IDEAS

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    1. Pill, Juri, 1971. "The Delphi method: Substance, context, a critique and an annotated bibliography," Socio-Economic Planning Sciences, Elsevier, vol. 5(1), pages 57-71, February.
    2. Wang, Catharine & Gonzalez, Richard & Merajver, Sofia D., 2004. "Assessment of genetic testing and related counseling services: current research and future directions," Social Science & Medicine, Elsevier, vol. 58(7), pages 1427-1442, April.
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    1. Kibel, Mia & Vanstone, Meredith, 2017. "Reconciling ethical and economic conceptions of value in health policy using the capabilities approach: A qualitative investigation of Non-Invasive Prenatal Testing," Social Science & Medicine, Elsevier, vol. 195(C), pages 97-104.
    2. Anand Chand & Suwastika Naidu, 2017. "Health Care Service Quality and Availability of Skilled Health Workforce: A Panel Data Modelling of the UK, USA and Israel," Modern Applied Science, Canadian Center of Science and Education, vol. 11(10), pages 152-152, October.
    3. Katherine Payne & Marion McAllister & Linda M. Davies, 2013. "Valuing The Economic Benefits Of Complex Interventions: When Maximising Health Is Not Sufficient," Health Economics, John Wiley & Sons, Ltd., vol. 22(3), pages 258-271, March.
    4. Peter J. Neumann & Joshua T. Cohen & James K. Hammitt & Thomas W. Concannon & Hannah R. Auerbach & ChiHui Fang & David M. Kent, 2012. "Willingness‐to‐pay for predictive tests with no immediate treatment implications: a survey of US residents," Health Economics, John Wiley & Sons, Ltd., vol. 21(3), pages 238-251, March.

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