Crohn's Disease Patients Report Their Definitions of “Rare” Adverse Events, Remission and the Importance of Mucosal Healing: A Quantitative and Qualitative Study of What Patients Really Think

Siegel, Corey A.; Marden, Sadie M.; Kozlowski, Courtney; Loew, Burr J.; Levy, L. Campbell; Bensen, Steve P.

doi:10.1016/s0016-5085(11)60571-4

Cited by 6 publications

(2 citation statements)

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“…Therefore, it is important to identify an optimal approach for using this diagnostic tool in an effort to maximize its clinical value. [30][31][32] Feasibility and frequency of endoscopic assessment Although MH is a well-established outcome measure in clinical trials, 5,33-48 data regarding its use as a treatment target in clinical practice are limited. A recent retrospective cohort study, performed at a single institution, evaluated the practicality of treating to the target of MH in 67 patients with CD.…”

Section: Performance Characteristics Of Available Diagnostic Tools Enmentioning

confidence: 99%

Assessment of mucosal healing in inflammatory bowel disease: review

Dulai¹,

Levesque²,

Feagan³

et al. 2015

Gastrointestinal Endoscopy

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Section: Performance Characteristics Of Available Diagnostic Tools Enmentioning

confidence: 99%

Assessment of mucosal healing in inflammatory bowel disease: review

Dulai¹,

Levesque²,

Feagan³

et al. 2015

Gastrointestinal Endoscopy

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“…This paradigm combines a scientific reference group (eg, IBD expert panel) with a technical production group (eg, web developers) and then seeks stakeholder consultations (patients/providers). Focus groups were held to perform cognitive interviews with patients to test and iteratively improve graphical representations of benefit and risk data for Crohn's disease 35. The investigators started with a previously developed ‘toolkit’ of patient communication charts and figures and then tested for comprehension and solicited feedback on how to improve these tools.…”

Section: Developing Tools To Improve Communication With Ibd Patientsmentioning

confidence: 99%

Shared decision making in inflammatory bowel disease: helping patients understand the tradeoffs between treatment options

Siegel

2011

Gut

100

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The treatment of inflammatory bowel disease is becoming more complicated with new medications and new treatment paradigms. Although data are accumulating that the earlier use of immunomodulators and anti-tumor necrosis factor agents are more effective than the standard "step-up" pyramidal treatment algorithm, patients may not be comfortable with this more intensive therapeutic approach. The process of shared decision making engages patients in treatment decisions to optimize the chance that a chosen therapy matches their personal preferences for care. Decision aids are standard shared decision making tools, which are used to present evidence-based data in a patient-friendly manner to help patients with preference-sensitive decisions. Not all care decisions are preference-sensitive, and not all patients are interested in being part of a shared medical decision. The responsibility of the provider is to identify how much of a role patients want, and then determine which decisions need their input to provide the best patient-centered care. The overall goal is to involve patients in decisions so that they are educated about their options, confident in the plan, adherent to chosen therapy and ultimately have a better quality of life.

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