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January 23, 2026Journal of Crohn s and Colitis

N08 What patients expect and perceive in terms of their participation in their health and healthcare, while living with inflammatory bowel disease

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Authors

PSPatricia SköldAEA C EldhMBMarcus Bendtsen

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Overview

Examines patient participation preferences and experiences in healthcare among individuals with inflammatory bowel disease, indicating a need for improved engagement strategies.

Key Points

  • To explore the preferences and experiences of patient participation in healthcare for individuals with inflammatory bowel disease.
  • Survey of patients with IBD using the 4Ps tool to assess preferences and experiences of participation.
  • Statistical analysis of 737 unique responses to evaluate discrepancies between preferences and actual participation.
  • Focus on twelve attributes related to patient participation.
  • A majority of patients rated various participation aspects as very important or crucial.
  • Key attributes for participation included being listened to, explaining symptoms, and learning about care plans.
  • 39-51% of patients reported a mismatch between their desired and actual participation, often preferring more engagement.
  • Mismatches were particularly noticeable in managing prescribed care and self-care.

Cite This Study

Sköld et al. (2026) studied this question.

synapsesocial.com/papers/69731089c8125b09b0d203b4https://doi.org/10.1093/ecco-jcc/jjaf231.1540
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