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Understanding Attributes that Influence Physician and Caregiver Decisions About Neurotechnology for Pediatric Drug-Resistant Epilepsy: A Formative Qualitative Study to Support the Development of a Discrete Choice Experiment

Author

Listed:
  • Glory Apantaku

    (The University of British Columbia)

  • Magda Aguiar

    (The University of British Columbia)

  • K. Julia Kaal

    (The University of British Columbia)

  • Patrick J. McDonald

    (University of British Columbia
    University of British Columbia)

  • Mary B. Connolly

    (University of British Columbia)

  • Viorica Hrincu

    (University of British Columbia)

  • Judy Illes

    (University of British Columbia)

  • Mark Harrison

    (The University of British Columbia
    St. Paul’s Hospital)

Abstract

Objective This study reports formative qualitative research used to analyze decision making regarding neurotechnological interventions for pediatric drug-resistant epilepsy from the perspective of physicians and caregivers and the derivation of attributes for a discrete choice experiment. Methods Purposive and convenience sampling was used to recruit physicians and caregivers. Physician focus group sessions were held at key national conferences in the USA and Canada. Caregivers were approached through clinics with established epilepsy surgery programs in the USA and Canada. Thematic analysis was used to identify critical features of decisions about treatment outcomes, procedural trade-offs, values, and concerns surrounding conventional and novel pediatric drug-resistant epilepsy interventions among physicians and caregivers. Results The results highlight the presence of central attributes that are considered by both groups in decision making, such as “chances of seizure freedom”, “risk”, “availability of evidence”, and “cost to families”, as well as attributes that reflect important differences between groups. Physicians were focused on the specifics of treatment options, while caregivers thought more holistically, considering the overall well-being of their children. Discussion The findings shaped the development of a discrete choice experiment to understand the likely uptake of different neurotechnologies. We identified differences in decision making and thus designed two discrete choice experiments to elicit preferences for pediatric drug-resistant epilepsy treatments, one aimed at clinicians and one at caregivers. The variation we observed highlights the value of seeking to understand the influences at the point of clinical decision making and incorporating this information into care.

Suggested Citation

  • Glory Apantaku & Magda Aguiar & K. Julia Kaal & Patrick J. McDonald & Mary B. Connolly & Viorica Hrincu & Judy Illes & Mark Harrison, 2022. "Understanding Attributes that Influence Physician and Caregiver Decisions About Neurotechnology for Pediatric Drug-Resistant Epilepsy: A Formative Qualitative Study to Support the Development of a Dis," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 15(2), pages 219-232, March.
  • Handle: RePEc:spr:patien:v:15:y:2022:i:2:d:10.1007_s40271-021-00544-w
    DOI: 10.1007/s40271-021-00544-w
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    References listed on IDEAS

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    1. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1999. "Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model," Social Science & Medicine, Elsevier, vol. 49(5), pages 651-661, September.
    2. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1997. "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)," Social Science & Medicine, Elsevier, vol. 44(5), pages 681-692, March.
    3. Nora Moumjid & Amiram Gafni & Alain Brémond & Marie-Odile Carrère, 2007. "Shared Decision Making in the Medical Encounter: Are We All Talking about the Same Thing?," Medical Decision Making, , vol. 27(5), pages 539-546, September.
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