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

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Title: Codesigning a Neurocognitive Assessment Protocol for Hyperphagia: Perspectives From Stakeholders in Prader–Willi Syndrome.
Authors: Feighan, Sarah‐Marie (AUTHOR), McNicholas, Áine (AUTHOR), Key, Alexandra P. (AUTHOR), Dimitropoulos, Anastasia (AUTHOR), Roche, Edna (AUTHOR), Molloy, Ciara J. (AUTHOR), Gallagher, Louise (AUTHOR)
Source: Journal of Intellectual Disability Research. Jan2026, Vol. 70 Issue 1, p58-67. 10p.
Subjects: Prader-Willi syndrome, Attentional bias, Sensory defensiveness, Research funding, Qualitative research, Focus groups, Eye movement measurements, Content analysis, Pilot projects, Questionnaires, Fatigue (Physiology), Sample size (Statistics), Families, Hyperphagia, Experience, Caregivers, Neuropsychological tests, Stakeholder analysis, Comparative studies, Cognition, Inter-observer reliability, Patient participation, Disease complications
Abstract: Background: Hyperphagia—characterized by an overwhelming drive to consume food—is a core feature of Prader–Willi syndrome (PWS) that profoundly impacts individuals and families. Objective measures of hyperphagia are urgently needed to support therapeutic development and improve clinical outcomes for individuals with PWS. Eye tracking may offer a scalable, noninvasive method for capturing attentional responses to food cues. By capturing visual attentional responses to food before and after eating, eye tracking may offer an indirect, objective method for assessing impairments in satiety that are associated with hyperphagia. Methods: We adapted a previously developed eye‐tracking task—designed to detect attentional bias to food stimuli in hungry versus satiated states—for use with the PWS community. A codesign approach was used, involving focus groups with caregivers and professionals. Stakeholders identified key barriers to participation, including food‐related anxiety, sensory sensitivities and the need for predictable routines. Protocol adaptations included flexible scheduling, individualized meal options and 'food certainty' to reduce stress and enhance adherence. Results: The adapted protocol was feasible and acceptable, with a 92.6% completion rate and full adherence to fasting and standardized meal requirements among participants with PWS. Stakeholders reported high engagement and comfort with the revised approach. Conclusion: This study demonstrates the value of codesign in tailoring neurocognitive protocols for individuals with complex needs. By integrating stakeholder insights, we enhanced feasibility, accessibility and data quality. The adapted eye‐tracking protocol shows promise as a scalable, objective method to assess hyperphagia‐related cognitive responses and may inform future clinical trials in PWS and related conditions. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Intellectual Disability Research is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Codesigning a Neurocognitive Assessment Protocol for Hyperphagia: Perspectives From Stakeholders in Prader–Willi Syndrome.
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  Data: <searchLink fieldCode="AR" term="%22Feighan%2C+Sarah‐Marie%22">Feighan, Sarah‐Marie</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22McNicholas%2C+Áine%22">McNicholas, Áine</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Key%2C+Alexandra P%2E%22">Key, Alexandra P.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Dimitropoulos%2C+Anastasia%22">Dimitropoulos, Anastasia</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Roche%2C+Edna%22">Roche, Edna</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Molloy%2C+Ciara J%2E%22">Molloy, Ciara J.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gallagher%2C+Louise%22">Gallagher, Louise</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Intellectual+Disability+Research%22">Journal of Intellectual Disability Research</searchLink>. Jan2026, Vol. 70 Issue 1, p58-67. 10p.
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  Data: <searchLink fieldCode="DE" term="%22Prader-Willi+syndrome%22">Prader-Willi syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Attentional+bias%22">Attentional bias</searchLink><br /><searchLink fieldCode="DE" term="%22Sensory+defensiveness%22">Sensory defensiveness</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Focus+groups%22">Focus groups</searchLink><br /><searchLink fieldCode="DE" term="%22Eye+movement+measurements%22">Eye movement measurements</searchLink><br /><searchLink fieldCode="DE" term="%22Content+analysis%22">Content analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Pilot+projects%22">Pilot projects</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Fatigue+%28Physiology%29%22">Fatigue (Physiology)</searchLink><br /><searchLink fieldCode="DE" term="%22Sample+size+%28Statistics%29%22">Sample size (Statistics)</searchLink><br /><searchLink fieldCode="DE" term="%22Families%22">Families</searchLink><br /><searchLink fieldCode="DE" term="%22Hyperphagia%22">Hyperphagia</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Neuropsychological+tests%22">Neuropsychological tests</searchLink><br /><searchLink fieldCode="DE" term="%22Stakeholder+analysis%22">Stakeholder analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Comparative+studies%22">Comparative studies</searchLink><br /><searchLink fieldCode="DE" term="%22Cognition%22">Cognition</searchLink><br /><searchLink fieldCode="DE" term="%22Inter-observer+reliability%22">Inter-observer reliability</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+participation%22">Patient participation</searchLink><br /><searchLink fieldCode="DE" term="%22Disease+complications%22">Disease complications</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Hyperphagia—characterized by an overwhelming drive to consume food—is a core feature of Prader–Willi syndrome (PWS) that profoundly impacts individuals and families. Objective measures of hyperphagia are urgently needed to support therapeutic development and improve clinical outcomes for individuals with PWS. Eye tracking may offer a scalable, noninvasive method for capturing attentional responses to food cues. By capturing visual attentional responses to food before and after eating, eye tracking may offer an indirect, objective method for assessing impairments in satiety that are associated with hyperphagia. Methods: We adapted a previously developed eye‐tracking task—designed to detect attentional bias to food stimuli in hungry versus satiated states—for use with the PWS community. A codesign approach was used, involving focus groups with caregivers and professionals. Stakeholders identified key barriers to participation, including food‐related anxiety, sensory sensitivities and the need for predictable routines. Protocol adaptations included flexible scheduling, individualized meal options and 'food certainty' to reduce stress and enhance adherence. Results: The adapted protocol was feasible and acceptable, with a 92.6% completion rate and full adherence to fasting and standardized meal requirements among participants with PWS. Stakeholders reported high engagement and comfort with the revised approach. Conclusion: This study demonstrates the value of codesign in tailoring neurocognitive protocols for individuals with complex needs. By integrating stakeholder insights, we enhanced feasibility, accessibility and data quality. The adapted eye‐tracking protocol shows promise as a scalable, objective method to assess hyperphagia‐related cognitive responses and may inform future clinical trials in PWS and related conditions. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>Copyright of Journal of Intellectual Disability Research is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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RecordInfo BibRecord:
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    Identifiers:
      – Type: doi
        Value: 10.1111/jir.70053
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 10
        StartPage: 58
    Subjects:
      – SubjectFull: Prader-Willi syndrome
        Type: general
      – SubjectFull: Attentional bias
        Type: general
      – SubjectFull: Sensory defensiveness
        Type: general
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Focus groups
        Type: general
      – SubjectFull: Eye movement measurements
        Type: general
      – SubjectFull: Content analysis
        Type: general
      – SubjectFull: Pilot projects
        Type: general
      – SubjectFull: Questionnaires
        Type: general
      – SubjectFull: Fatigue (Physiology)
        Type: general
      – SubjectFull: Sample size (Statistics)
        Type: general
      – SubjectFull: Families
        Type: general
      – SubjectFull: Hyperphagia
        Type: general
      – SubjectFull: Experience
        Type: general
      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: Neuropsychological tests
        Type: general
      – SubjectFull: Stakeholder analysis
        Type: general
      – SubjectFull: Comparative studies
        Type: general
      – SubjectFull: Cognition
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      – SubjectFull: Inter-observer reliability
        Type: general
      – SubjectFull: Patient participation
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      – SubjectFull: Disease complications
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    Titles:
      – TitleFull: Codesigning a Neurocognitive Assessment Protocol for Hyperphagia: Perspectives From Stakeholders in Prader–Willi Syndrome.
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              Text: Jan2026
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              Y: 2026
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