Codesigning a Neurocognitive Assessment Protocol for Hyperphagia: Perspectives From Stakeholders in Prader-Willi...

Area of Science:

• Neuroscience
• Psychology

Background:

• Hyperphagia, an excessive drive to eat, is a primary characteristic of Prader-Willi syndrome (PWS).
• Objective measures are crucial for developing PWS therapies and improving patient outcomes.
• Eye tracking offers a noninvasive method to assess attentional responses to food cues, potentially indicating satiety impairments linked to hyperphagia.

Purpose of the Study:

• To adapt an existing eye-tracking task for assessing attentional bias to food stimuli in individuals with PWS.
• To enhance the feasibility and acceptability of the eye-tracking protocol through a codesign approach with stakeholders.

Main Methods:

• A codesign strategy was employed, incorporating feedback from caregivers and professionals to address participation barriers in the PWS community.
• Protocol modifications included flexible scheduling, personalized meal choices, and 'food certainty' to mitigate anxiety and improve adherence.
• The adapted task assessed visual attentional responses to food cues in participants with PWS.

Main Results:

• The adapted eye-tracking protocol demonstrated high feasibility and acceptability, with a 92.6% completion rate among participants with PWS.
• Participants with PWS fully adhered to fasting and standardized meal requirements.
• Stakeholders reported positive engagement and comfort with the revised protocol.

Conclusions:

• Codesign is valuable for tailoring neurocognitive protocols for individuals with complex needs, enhancing feasibility, accessibility, and data quality.
• The adapted eye-tracking protocol shows potential as a scalable, objective tool for assessing hyperphagia-related cognitive responses in PWS.
• This method may aid future clinical trials for PWS and related disorders.