Doctors Think They Share Decisions With IBD Patients. Patients Disagree, Study Finds

Shared decision making has become one of the most celebrated ideals in modern medicine, a model in which clinicians and patients jointly weigh treatment options, exchange information, and arrive at choices that reflect both scientific evidence and the patient’s own values. For people living with inflammatory bowel disease, a chronic and unpredictable condition encompassing Crohn’s disease and ulcerative colitis, the stakes of this model are unusually high. Treatment decisions involve potent immunosuppressive biologics, surgery, and lifelong monitoring, all against a backdrop of relapsing symptoms that reshape daily life. A new qualitative study from Belgium, published in BMC Health Services Research, offers one of the most detailed portraits yet of how shared decision making actually unfolds in inflammatory bowel disease care, and the picture it paints is more complicated than the rhetoric suggests.

The research team, led by Elise Schoefs and Lauren Michiels of KU Leuven together with colleagues from University Hospitals Leuven, the Belgian IBD Nurses and Study Coordinators Association, and patient organization partners, conducted semi-structured interviews with fifteen patients with inflammatory bowel disease, eleven gastroenterologists, and twelve inflammatory bowel disease nurses across Belgium. The interviews were transcribed verbatim and analyzed using a thematic framework method, an approach that allows researchers to systematically code and compare experiences across different stakeholder groups. The study received ethics approval from the Ethical Committee Research UZ/KU Leuven in November 2022, and all participants provided informed consent. Patient organizations, including the Crohn and Colitis ulcerosa Vereniging, helped recruit participants and refine study materials, ensuring that the perspectives captured were grounded in the lived realities of the disease community.

The central finding is a striking perceptual gap between clinicians and patients. Gastroenterologists reported that they routinely incorporate most steps of the shared decision making process into their consultations, describing a practice in which options are presented and preferences invited. Patients, however, described something messier and less consistent. Their accounts highlighted shortcomings in three particular domains: emotional support, clarity of information, and the elicitation of preferences. In other words, while doctors may believe they are offering choices, patients often experienced consultations in which their emotional state went unaddressed, the information provided was difficult to digest, and their own priorities were never explicitly asked about. This divergence matters because shared decision making is not merely a checklist of behaviors but a relational process, and if the two parties perceive the same conversation so differently, the process is unlikely to be functioning as intended.

One of the study’s most consequential findings concerns the role of the inflammatory bowel disease nurse. Across all three participant groups, nurses were viewed as essential partners in the decision making process, complementing rather than duplicating the work of gastroenterologists. Patients and clinicians alike described nurses as figures who reinforce information delivered in consultations, translate medical jargon into understandable terms, facilitate communication between the patient and the physician, and attend to physical, emotional, and social needs that a time-pressed specialist may not have the bandwidth to explore. In many chronic disease fields, specialist nurses have quietly become the connective tissue of care teams, and this study provides qualitative evidence that in inflammatory bowel disease, they are often the ones who make shared decision making practically achievable rather than merely aspirational.

The researchers also mapped the barriers that keep shared decision making from being implemented consistently. Low health literacy and limited disease-related knowledge among patients emerged as a major obstacle, since patients cannot meaningfully weigh options they do not understand. Poor communication between clinicians and patients compounded the problem, and time constraints within busy outpatient clinics surfaced repeatedly as a structural constraint that squeezes out the conversational space that genuine deliberation requires. These barriers are not unique to gastroenterology; they echo findings from shared decision making research across oncology, primary care, and chronic disease management. What the new study adds is a disease-specific account of how these forces interact in a condition whose treatment landscape, dominated by an expanding arsenal of biologics and small molecules, has grown dramatically more complex in the past decade.

Against these barriers, the study identified a set of facilitators that could accelerate adoption. Participants pointed to the perceived clinical and relational benefits of shared decision making, including improved quality of care, better patient adherence to treatment, and greater professional fulfillment for clinicians. Greater awareness of what shared decision making actually entails, and enhanced education for both patients and healthcare providers, were also seen as key enablers. The authors argue that demonstrating and promoting these intrinsic and consequential benefits may be one of the most effective levers for encouraging widespread adoption, since clinicians who experience the payoff of collaborative consultations are more likely to invest the additional effort they require.

The technical framing of the study draws on established implementation science. The researchers anchored their analysis in the Ottawa Model of Research Use, a framework for understanding how evidence-based practices are adopted in clinical settings, and reported their work according to the Consolidated Criteria for Reporting Qualitative Research, the standard checklist for rigor in qualitative studies. They also reference patient decision aids, structured tools designed to present treatment options and outcomes in balanced, comprehensible formats, as one potential mechanism for supporting the information exchange at the heart of shared decision making. The study’s conclusions point toward a combination of interventions: formal shared decision making training for clinicians, organizational changes that protect consultation time, and a deliberate strengthening and recognition of the inflammatory bowel disease nurse’s role within multidisciplinary teams.

Why does this matter beyond the gastroenterology clinic? Inflammatory bowel disease affects millions of people worldwide, and its prevalence is rising in newly industrialized countries. Because the disease is chronic, diagnosed most often in young adults, and managed through sequential treatment escalations, patients face recurring decision points over decades: whether to start a biologic, whether to switch therapies when response wanes, whether to pursue surgery, how to balance medication risks against pregnancy plans and career demands. Each of these decisions is preference-sensitive, meaning that reasonable people with the same clinical picture might reasonably choose differently. Preference-sensitive decisions are precisely where shared decision making delivers the greatest value, and precisely where its absence leaves patients feeling steamrolled or adrift.

The study’s multi-stakeholder design is also methodologically significant. Many evaluations of shared decision making rely on a single perspective, usually the clinician’s self-report or the patient’s survey response. By interviewing patients, gastroenterologists, and nurses separately and comparing their accounts, the Belgian team exposed the perception gap that single-perspective studies can miss. The finding that clinicians believe they are practicing shared decision making while patients experience inconsistency is not an accusation of bad faith; it is a well-documented phenomenon in implementation research, where self-reported practice tends to overestimate actual fidelity to a model. Closing that gap requires feedback, training, and structural support rather than exhortation alone.

The authors conclude that although shared decision making is widely recognized in inflammatory bowel disease care, its implementation remains inconsistent due to structural and interpersonal barriers, and they call for multi-stakeholder strategies to embed it more reliably. For health systems wrestling with how to make patient-centered care real rather than rhetorical, the study offers a concrete agenda: invest in nurse-led support structures, educate both sides of the consultation, protect the time that genuine deliberation demands, and measure whether patients, not just their physicians, actually experience decisions as shared. As biologics reshape what is possible in inflammatory bowel disease treatment, the question is no longer only which drug works best, but who gets a voice in choosing it.

Subject of Research: Shared decision making in inflammatory bowel disease care and the role of IBD nurses

Article Title: Shared decision making in inflammatory bowel disease: a qualitative study with patients, gastroenterologists, and nurses

Article References: Schoefs, E., Michiels, L., Straetemans, N., Ferrante, M., Verstockt, B., Sabino, J., Debrun, L., Loddewijkx, E., Van Audenhove, C., Vermeire, S., & Huys, I. (2026). Shared decision making in inflammatory bowel disease: a qualitative study with patients, gastroenterologists, and nurses. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15552-5

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15552-5

Keywords: inflammatory bowel disease, shared decision making, patient-centered care, IBD nurses, Crohn's disease, ulcerative colitis, qualitative research, gastroenterology, health literacy, barriers and facilitators, biologics, health services research