IDEAS home Printed from https://ideas.repec.org/a/eee/hepoli/v84y2007i1p112-122.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0168-8510(07)00079-6
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. 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.
    2. 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.
    3. 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.
    4. 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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Zahra Karbasi & Maliheh Kadivar & Reza Safdari & Leila Shahmoradi & Maryam Zahmatkeshan & Somayyeh Zakerabasali & Shahabeddin Abhari & Azadeh Sayarifard, 2020. "Better monitoring of abused children by designing a child abuse surveillance system: Determining national child abuse minimum data set," International Journal of Health Planning and Management, Wiley Blackwell, vol. 35(4), pages 843-851, July.
    2. Zanakis, Stelios H. & Mandakovic, Tomislav & Gupta, Sushil K. & Sahay, Sundeep & Hong, Sungwan, 1995. "A review of program evaluation and fund allocation methods within the service and government sectors," Socio-Economic Planning Sciences, Elsevier, vol. 29(1), pages 59-79, March.
    3. Saud Alshehri & Yacine Rezgui & Haijiang Li, 2015. "Delphi-based consensus study into a framework of community resilience to disaster," Natural Hazards: Journal of the International Society for the Prevention and Mitigation of Natural Hazards, Springer;International Society for the Prevention and Mitigation of Natural Hazards, vol. 75(3), pages 2221-2245, February.
    4. Siti Raudhah M. Yusop & Mohamad Sattar Rasul & Ruhizan Mohammad Yasin & Haida Umiera Hashim, 2023. "Identifying and Validating Vocational Skills Domains and Indicators in Classroom Assessment Practices in TVET," Sustainability, MDPI, vol. 15(6), pages 1-27, March.
    5. McCarl, Bruce A. & Musser, Wesley N., 1985. "Modeling Long Run Risk In Production And Investment Decisions," Regional Research Projects > 1985: S-180 Annual Meeting, March 24-27, 1985, Charleston, South Carolina 271799, Regional Research Projects > S-180: An Economic Analysis of Risk Management Strategies for Agricultural Production Firms.
    6. C. J. Torrecilla-Salinas & O. Troyer & M. J. Escalona & M. Mejías, 2019. "A Delphi-based expert judgment method applied to the validation of a mature Agile framework for Web development projects," Information Technology and Management, Springer, vol. 20(1), pages 9-40, March.
    7. Hyun Baek & Sun-Kyoung Park, 2015. "Sustainable Development Plan for Korea through Expansion of Green IT: Policy Issues for the Effective Utilization of Big Data," Sustainability, MDPI, vol. 7(2), pages 1-21, January.
    8. Scemama, Pierre & Mongruel, Rémi & Kermagoret, Charlène & Bailly, Denis & Carlier, Antoine & Mao, Patrick Le & Vaschalde, et Diane, 2022. "Guidance for stakeholder consultation to support national ecosystem services assessment: A case study from French marine assessment," Ecosystem Services, Elsevier, vol. 54(C).
    9. Azimatun Noor Aizuddin & Abdul Rahman Ramdzan & Sharifah Azween Syed Omar & Zuria Mahmud & Zarina A. Latiff & Salleh Amat & Keng Wee Teik & Ch’ng Gaik Siew & Haniza Rais & Syed Mohamed Aljunid, 2021. "Genetic Testing for Cancer Risk: Is the Community Willing to Pay for It?," IJERPH, MDPI, vol. 18(16), pages 1-11, August.
    10. Peyron, Christine & Pélissier, Aurore & Béjean, Sophie, 2018. "Preference heterogeneity with respect to whole genome sequencing. A discrete choice experiment among parents of children with rare genetic diseases," Social Science & Medicine, Elsevier, vol. 214(C), pages 125-132.
    11. Hardaker, J. B., 1982. "Fundamental Aspects Of Risk And Uncertainty In Agriculture," Agrekon, Agricultural Economics Association of South Africa (AEASA), vol. 21(2), October.
    12. Albada, Akke & Ausems, Margreet G.E.M. & van Dulmen, Sandra, 2014. "Counselee participation in follow-up breast cancer genetic counselling visits and associations with achievement of the preferred role, cognitive outcomes, risk perception alignment and perceived perso," Social Science & Medicine, Elsevier, vol. 116(C), pages 178-186.
    13. Unknown, 1998. "References/Literature Cited," Commodity Costs and Returns Estimation Handbook,, Iowa State University.
    14. Wesley Buckwalter & Andrew Peterson, 2020. "Public attitudes toward allocating scarce resources in the COVID-19 pandemic," PLOS ONE, Public Library of Science, vol. 15(11), pages 1-20, November.
    15. Miller, Fiona Alice & Ahern, Catherine & Ogilvie, Jacqueline & Giacomini, Mita & Schwartz, Lisa, 2005. "Ruling in and ruling out: Implications of molecular genetic diagnoses for disease classification," Social Science & Medicine, Elsevier, vol. 61(12), pages 2536-2545, December.
    16. Yi-Chung Hu & Ping-Chuan Lee & Yuh-Shy Chuang & Yu-Jing Chiu, 2018. "Improving the Sustainable Competitiveness of Service Quality within Air Cargo Terminals," Sustainability, MDPI, vol. 10(7), pages 1-15, July.
    17. Shim, Jae-Mahn & Kim, Jibum, 2020. "Contextualizing geneticization and medical pluralism: How variable institutionalization of traditional, complementary, and alternative medicine (TCAM) conditions effects of genetic beliefs on utilizat," Social Science & Medicine, Elsevier, vol. 267(C).
    18. Kamaruzzaman, Syahrul Nizam & Lou, Eric Choen Weng & Wong, Phui Fung & Edwards, Rodger & Hamzah, Noraini & Ghani, Mohd Khairolden, 2019. "Development of a non-domestic building refurbishment scheme for Malaysia: A Delphi approach," Energy, Elsevier, vol. 167(C), pages 804-818.
    19. Sonal Singh & Julie Beyrer & Xiaofeng Zhou & Joel Swerdel & Raymond A. Harvey & Kenneth Hornbuckle & Leo Russo & Kanwal Ghauri & Ivan H. Abi-Elias & John S. Cox & Carla Rodriguez-Watson, 2023. "Development and Evaluation of the Algorithm CErtaInty Tool (ACE-IT) to Assess Electronic Medical Record and Claims-based Algorithms’ Fit for Purpose for Safety Outcomes," Drug Safety, Springer, vol. 46(1), pages 87-97, January.
    20. Mette Bergman & Caroline Graff & Maria Eriksdotter & Marja Schuster & Kerstin S. Fugl‐Meyer, 2017. "Overall and domain‐specific life satisfaction when living with familial Alzheimer's disease risk: A quantitative approach," Nursing & Health Sciences, John Wiley & Sons, vol. 19(4), pages 452-458, December.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:hepoli:v:84:y:2007:i:1:p:112-122. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu or the person in charge (email available below). General contact details of provider: http://www.elsevier.com/locate/healthpol .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.