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Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma

Author

Listed:
  • Helle Sorensen von Essen

    (Department of Neurosurgery, Odense University Hospital, Kloevervaenget 47, Indgang 44, 46, 1. sal, DK-5000 Odense, Denmark
    Clinical Institute, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark)

  • Frantz Rom Poulsen

    (Department of Neurosurgery, Odense University Hospital, Kloevervaenget 47, Indgang 44, 46, 1. sal, DK-5000 Odense, Denmark
    Clinical Institute, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark
    BRIDGE (Brain Research-Interdisciplinary Guided Excellence), University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark)

  • Rikke Hedegaard Dahlrot

    (Clinical Institute, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark
    Department of Oncology, Odense University Hospital, Kloevervaenget 19, DK-5000 Odense, Denmark
    The Danish Center for Particle Therapy, Palle Juul-Jensens Blvd. 99, DK-8200 Aarhus, Denmark)

  • Karin Piil

    (Department of Oncology, Center for Cancer and Organ Diseases, Copenhagen University Hospital, Blegdamsvej 9, DK-2100 Copenhagen, Denmark
    Department of Public Health, Aarhus University, Bartholins Allé 2, DK-8000 Aarhus, Denmark)

  • Karina Dahl Steffensen

    (Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark
    Center for Shared Decision Making, Region of Southern Denmark, Beriderbakken 4, DK-7100 Vejle, Denmark)

Abstract

When high-grade gliomas recur, patients, their families, and clinicians face difficult medical decisions. There is no curable treatment, and the treatment options all come with a risk of complications and adverse effects. The patients are often cognitively affected, and they need tailored decision support. The objective of this study was to develop a patient decision aid (PtDA) targeted at patients with recurrent high-grade gliomas. Based on existing knowledge and the International Patient Decision Aids Standards, the PtDA was developed through an iterative process. The PtDA was alpha-tested by potential users to assess its acceptability and usability. The development team comprised three clinicians, two patients, two family members, and a researcher. The fifth version of the PtDA was submitted to the alpha test. Eleven patients, nine family members, and eleven clinicians assessed the PtDA and found it acceptable. Three changes were made during the alpha test. Most participants perceived the PtDA to prepare patients for decision making and improve consultations. The involvement of potential users was emphasized during the development and alpha test process. The PtDA was assessed as useful and acceptable by patients, family members, and clinicians in the decision-making situation of recurrent high-grade glioma.

Suggested Citation

  • Helle Sorensen von Essen & Frantz Rom Poulsen & Rikke Hedegaard Dahlrot & Karin Piil & Karina Dahl Steffensen, 2022. "Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma," IJERPH, MDPI, vol. 19(12), pages 1-17, June.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:12:p:7396-:d:840277
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    References listed on IDEAS

    as
    1. Lauren Hoefel & Annette M. O’Connor & Krystina B. Lewis & Laura Boland & Lindsey Sikora & Jiale Hu & Dawn Stacey, 2020. "20th Anniversary Update of the Ottawa Decision Support Framework Part 1: A Systematic Review of the Decisional Needs of People Making Health or Social Decisions," Medical Decision Making, , vol. 40(5), pages 555-581, July.
    2. Dawn Stacey & France Légaré & Anne Lyddiatt & Anik M. C. Giguere & Manosila Yoganathan & Anton Saarimaki & Jordi Pardo Pardo & Tamara Rader & Peter Tugwell, 2016. "Translating Evidence to Facilitate Shared Decision Making: Development and Usability of a Consult Decision Aid Prototype," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 9(6), pages 571-582, December.
    3. Holly O. Witteman & Kristin G. Maki & Gratianne Vaisson & Jeanette Finderup & Krystina B. Lewis & Karina Dahl Steffensen & Caroline Beaudoin & Sandrine Comeau & Robert J. Volk, 2021. "Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration," Medical Decision Making, , vol. 41(7), pages 736-754, October.
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