IDEAS home Printed from https://ideas.repec.org/a/sae/medema/v31y2011i3p412-421.html
   My bibliography  Save this article

Longitudinal Changes in Patient Distress following Interactive Decision Aid Use among BRCA1/2 Carriers

Author

Listed:
  • Gillian W. Hooker
  • Kara-Grace Leventhal
  • Tiffani DeMarco
  • Beth N. Peshkin
  • Clinton Finch
  • Erica Wahl
  • Jessica Rispoli Joines
  • Karen Brown
  • Heiddis Valdimarsdottir
  • Marc D. Schwartz

Abstract

Background. Increasingly, women with a strong family history of breast cancer are seeking genetic testing as a starting point to making significant decisions regarding management of their cancer risks. Individuals who are found to be carriers of a BRCA1 or BRCA2 mutation have a substantially elevated risk for breast cancer and are frequently faced with the decision of whether to undergo risk-reducing mastectomy. Objective. In order to provide BRCA1/2 carriers with ongoing decision support for breast cancer risk management, a computer-based interactive decision aid was developed and tested against usual care in a randomized controlled trial. Design. Following genetic counseling, 214 female (aged 21–75 years) BRCA1/2 mutation carriers were randomized to usual care (UC; n = 114) or usual care plus decision aid (DA; n = 100) arms. UC participants received no further intervention; DA participants were sent the CD-ROM–based decision aid to view at home. Main Outcome Measures. The authors measured general distress, cancer-specific distress, and genetic testing–specific distress at 1-, 6-, and 12-month follow-up time points postrandomization. Results. Longitudinal analyses revealed a significant longitudinal impact of the DA on cancer-specific distress (B = 5.67, z = 2.81, P = 0.005), which varied over time (DA group by time; B = −2.19, z = −2.47, P = 0.01), and on genetic testing–specific distress (B = 5.55, z = 2.46, P = 0.01), which also varied over time (DA group by time; B = −2.46, z = −2.51, P = 0.01). Individuals randomized to UC reported significantly decreased distress in the month following randomization, whereas individuals randomized to the DA maintained their postdisclosure distress over the short term. By 12 months, the overall decrease in distress between the 2 groups was similar. Conclusion. This report provides new insight into the long-term longitudinal effects of DAs.

Suggested Citation

  • Gillian W. Hooker & Kara-Grace Leventhal & Tiffani DeMarco & Beth N. Peshkin & Clinton Finch & Erica Wahl & Jessica Rispoli Joines & Karen Brown & Heiddis Valdimarsdottir & Marc D. Schwartz, 2011. "Longitudinal Changes in Patient Distress following Interactive Decision Aid Use among BRCA1/2 Carriers," Medical Decision Making, , vol. 31(3), pages 412-421, May.
    • Handle: RePEc:sae:medema:v:31:y:2011:i:3:p:412-421
    DOI: 10.1177/0272989X10381283
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/0272989X10381283
    Download Restriction: no
    File URL: https://libkey.io/10.1177/0272989X10381283?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Keeney,Ralph L. & Raiffa,Howard, 1993. "Decisions with Multiple Objectives," Cambridge Books, Cambridge University Press, number 9780521438834, October.
    2. repec:cup:judgdm:v:3:y:2008:i::p:292-303 is not listed on IDEAS
    Full references (including those not matched with items on IDEAS)

    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. KARRI PASANEN & MIKKO KURTTILA & JOUNI PYKÄlÄINEN & JYRKI KANGAS & PEKKA LESKINEN, 2005. "Mesta — Non-Industrial Private Forest Owners' Decision-Support Environment For The Evaluation Of Alternative Forest Plans Over The Internet," International Journal of Information Technology & Decision Making (IJITDM), World Scientific Publishing Co. Pte. Ltd., vol. 4(04), pages 601-620.
    2. Gerd Gigerenzer, 1997. "Bounded Rationality: Models of Fast and Frugal Inference," Swiss Journal of Economics and Statistics (SJES), Swiss Society of Economics and Statistics (SSES), vol. 133(II), pages 201-218, June.
    3. Shuang Liu & Kirsten Maclean & Cathy Robinson, 2019. "A cost-effective framework to prioritise stakeholder participation options," EURO Journal on Decision Processes, Springer;EURO - The Association of European Operational Research Societies, vol. 7(3), pages 221-241, November.
    4. Smith, Chris M. & Shaw, Duncan, 2019. "The characteristics of problem structuring methods: A literature review," European Journal of Operational Research, Elsevier, vol. 274(2), pages 403-416.
    5. Chorus, Caspar & van Cranenburgh, Sander & Daniel, Aemiro Melkamu & Sandorf, Erlend Dancke & Sobhani, Anae & Szép, Teodóra, 2021. "Obfuscation maximization-based decision-making: Theory, methodology and first empirical evidence," Mathematical Social Sciences, Elsevier, vol. 109(C), pages 28-44.
    6. Perrels, Adriaan & Molarius, Riitta & Porthin, Markus & Rosqvist, Tony, 2008. "Testing a Flood Protection Case by Means of a Group Decision Support System," Discussion Papers 449, VATT Institute for Economic Research.
    7. Ahrens, Heinz & Kantelhardt, Jochen, 2007. "Integrating Ecological And Economic Aspects In Land Use Concepts: Some Conclusions From A Regional Land Use Concept For Bayerisches Donauried," 81st Annual Conference, April 2-4, 2007, Reading University, UK 7986, Agricultural Economics Society.
    8. Baudry, Gino & Delrue, Florian & Legrand, Jack & Pruvost, Jérémy & Vallée, Thomas, 2017. "The challenge of measuring biofuel sustainability: A stakeholder-driven approach applied to the French case," Renewable and Sustainable Energy Reviews, Elsevier, vol. 69(C), pages 933-947.
    9. J-B Yang & D-L Xu & X Xie & A K Maddulapalli, 2011. "Multicriteria evidential reasoning decision modelling and analysis—prioritizing voices of customer," Journal of the Operational Research Society, Palgrave Macmillan;The OR Society, vol. 62(9), pages 1638-1654, September.
    10. Lupo, Toni, 2015. "Fuzzy ServPerf model combined with ELECTRE III to comparatively evaluate service quality of international airports in Sicily," Journal of Air Transport Management, Elsevier, vol. 42(C), pages 249-259.
    11. Guo, Mengzhuo & Zhang, Qingpeng & Liao, Xiuwu & Chen, Frank Youhua & Zeng, Daniel Dajun, 2021. "A hybrid machine learning framework for analyzing human decision-making through learning preferences," Omega, Elsevier, vol. 101(C).
    12. Yuval Rottenstreich & Alex Markle & Johannes Müller-Trede, 2023. "Risky Sure Things," Management Science, INFORMS, vol. 69(8), pages 4707-4720, August.
    13. Viral Gupta & P. K. Kapur & Deepak Kumar, 2019. "Prioritizing and Optimizing Disaster Recovery Solution using Analytic Network Process and Multi Attribute Utility Theory," International Journal of Information Technology & Decision Making (IJITDM), World Scientific Publishing Co. Pte. Ltd., vol. 18(01), pages 171-207, January.
    14. Florian Methling & Rüdiger Nitzsch, 2019. "Thematic portfolio optimization: challenging the core satellite approach," Financial Markets and Portfolio Management, Springer;Swiss Society for Financial Market Research, vol. 33(2), pages 133-154, June.
    15. Rogerson, Ellen C. & Lambert, James H., 2012. "Prioritizing risks via several expert perspectives with application to runway safety," Reliability Engineering and System Safety, Elsevier, vol. 103(C), pages 22-34.
    16. Figueira, Jose & Roy, Bernard, 2002. "Determining the weights of criteria in the ELECTRE type methods with a revised Simos' procedure," European Journal of Operational Research, Elsevier, vol. 139(2), pages 317-326, June.
    17. P. S. Nagpaul & Santanu Roy, 2003. "Constructing a multi-objective measure of research performance," Scientometrics, Springer;Akadémiai Kiadó, vol. 56(3), pages 383-402, March.
    18. Robin Gregory & Ralph L. Keeney, 2017. "A Practical Approach to Address Uncertainty in Stakeholder Deliberations," Risk Analysis, John Wiley & Sons, vol. 37(3), pages 487-501, March.
    19. Kadziński, Miłosz & Wójcik, Michał & Ciomek, Krzysztof, 2022. "Review and experimental comparison of ranking and choice procedures for constructing a univocal recommendation in a preference disaggregation setting," Omega, Elsevier, vol. 113(C).
    20. Huber, Joel & Viscusi, W. Kip & Bell, Jason, 2008. "Reference dependence in iterative choices," Organizational Behavior and Human Decision Processes, Elsevier, vol. 106(2), pages 143-152, July.

    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:sae:medema:v:31:y:2011:i:3:p:412-421. 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: SAGE Publications (email available below). General contact details of provider: .

    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.