Shared Decision Making in Inflammatory Bowel Disease: An Observational Study Combining Patient Physician and Observer Perspectives
Author(s)
Elise Schoefs, MSc1, Cato Verstraeten, MSc1, Nele Boonen, PharmD1, Martina Vandebroek, PhD2, João Sabino, PhD3, Bram Verstockt, PhD3, Marc Ferrante, PhD3, Séverine Vermeire, PhD3, Isabelle Huys, PharmD, PhD1.
1Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium, 2Faculty of Economics and Business, KU Leuven, Leuven, Belgium, 3Department of Gastroenterology and Hepatology, University Hospitals Leuven, KU Leuven, Leuven, Belgium.
1Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium, 2Faculty of Economics and Business, KU Leuven, Leuven, Belgium, 3Department of Gastroenterology and Hepatology, University Hospitals Leuven, KU Leuven, Leuven, Belgium.
OBJECTIVES: Shared decision making (SDM) is a collaborative process in which patients and clinicians make healthcare decisions together. While SDM is relevant in inflammatory bowel disease (IBD) care due to numerous treatment options, data on its implementation in clinical practice remain limited. This study aimed to assess perceived and observed levels of SDM during IBD consultations and examine associations with clinician, patient, and consultation characteristics.
METHODS: In this prospective observational study, 83 IBD patients from an academic referral center were enrolled. All IBD-outpatient consultations were observed by a researcher outside the therapeutic team and rated using the validated OPTION instrument to objectively assess SDM. Subjective SDM was assessed through the Shared Decision-Making Questionnaires completed by patients (SDM-Q-9) and physicians (SDM-Q-Doc), alongside a socio-demographic survey. Statistical analyses were conducted using R.
RESULTS: The median OPTION score was 54.2 (SD: 10.0) out of 100, reflecting modest levels of observed SDM. In contrast, subjective SDM-Q-9 and SDM-Q-Doc scores were notably higher (medians: 93.3 and 91.1, respectively) but not correlated with each other (rs = - 0.004). No associations were found between observed and perceived SDM scores (SDM-Q-9: rs = -0.12: p = 0.266; SDM-Q-Doc: rs = 0.10: p = 0.370) or between OPTION scores and patient demographics. Longer consultations were associated with higher OPTION scores (rs = 0.65, p < 0.001). Wide variability was observed across OPTION items, ranging from a mean score of 0.2 to 3.7 (on a 0-4 scale).
CONCLUSIONS: Patients and clinicians frequently perceive a high level of SDM, even when objective assessments suggest otherwise. This discrepancy—driven by a small number of underperformed yet important SDM elements included in the OPTION instrument—suggests that routine IBD care may benefit from targeted training to support the consistent application of these aspects in clinical practice.
METHODS: In this prospective observational study, 83 IBD patients from an academic referral center were enrolled. All IBD-outpatient consultations were observed by a researcher outside the therapeutic team and rated using the validated OPTION instrument to objectively assess SDM. Subjective SDM was assessed through the Shared Decision-Making Questionnaires completed by patients (SDM-Q-9) and physicians (SDM-Q-Doc), alongside a socio-demographic survey. Statistical analyses were conducted using R.
RESULTS: The median OPTION score was 54.2 (SD: 10.0) out of 100, reflecting modest levels of observed SDM. In contrast, subjective SDM-Q-9 and SDM-Q-Doc scores were notably higher (medians: 93.3 and 91.1, respectively) but not correlated with each other (rs = - 0.004). No associations were found between observed and perceived SDM scores (SDM-Q-9: rs = -0.12: p = 0.266; SDM-Q-Doc: rs = 0.10: p = 0.370) or between OPTION scores and patient demographics. Longer consultations were associated with higher OPTION scores (rs = 0.65, p < 0.001). Wide variability was observed across OPTION items, ranging from a mean score of 0.2 to 3.7 (on a 0-4 scale).
CONCLUSIONS: Patients and clinicians frequently perceive a high level of SDM, even when objective assessments suggest otherwise. This discrepancy—driven by a small number of underperformed yet important SDM elements included in the OPTION instrument—suggests that routine IBD care may benefit from targeted training to support the consistent application of these aspects in clinical practice.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR215
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
Gastrointestinal Disorders