Randomized trial develops interventions based on expert and patient insights, suggesting improved epilepsy management.
BACKGROUND: Epilepsy is a chronic neurological disease affecting more than 3.5 million Americans. Epilepsy requires lifelong self-management, the most important predictor of epilepsy-related outcomes. There is a lack of epilepsy self-management interventions that comprehensively address psychological motivations underlying self-management: autonomy, competency, and relatedness. Most existing interventions specifically focus on autonomy and competence via self-efficacy and/or patient activation; while somewhat effective, their effects wane over time. A more comprehensive intervention that addresses all 3 components of motivated behavior, including relatedness, is needed. We developed an intervention targeting autonomy, competence, and relatedness—in the form of intimate relationship satisfaction—to improve epilepsy self-management in people with epilepsy. Because no similar interventions exist, we implemented a mini-Delphi technique to garner perspectives on our intervention from invested parties before formal testing. METHODS: The Delphi technique gathers evaluations on a new method through repeated rounds of discussion with experts or other invested parties. These repeated discussions lead to gradual improvement until all participants agree that the method is satisfactory. We established 2 advisory boards of invested parties: 1 with professionals (eg, a Clinical Nurse Specialist) and 1 with people with epilepsy. Advisory boards reviewed the intervention and provided qualitative and quantitative feedback. RESULTS: Advisory board members’ feedback provided guidance on inclusion criteria, participant compensation, intervention timelines, and content structure. After iterative revisions and rounds of feedback over a 3-month period, all members gave the finalized version of the intervention a highly positive evaluation. CONCLUSIONS: Guidance from the advisory boards allowed us to refine intervention content, delivery structure, and implementation strategies. The mini-Delphi technique provided a practical advantage in our development process, offering a low-cost, efficient way to obtain meaningful feedback from a diverse group of people with varied expertise and lived experience.
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Miller et al. (2026) studied this question.
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