Patient perspectives on the impact of Crohn’s disease: results from group interviews

Beth-Ann Norton,¹ Rosemarie Thomas,² Kathleen G Lomax,² Sharon Dudley-Brown^3
1Massachusetts General Hospital, Boston, MA, USA; ²Abbott Laboratories, Abbott Park, IL, USA; ³Johns Hopkins University, Schools of Medicine and Nursing, Baltimore, MD, USA

Aim: To understand the impact of Crohn’s disease (CD) on various aspects of daily life from the perspective of patients living with CD. Awareness of the disease and biologic therapies, patient satisfaction and adherence, and physician (provider) relationships were also assessed.
Background: CD is a chronic, inflammatory, autoimmune disorder of the gastrointestinal tract that substantially impacts patients’ physical and emotional well-being. For patients eligible for biologic therapy, anti-tumor necrosis factor agents represent an important addition to the available therapies for CD.
Methods: The study sample included biologic-naïve and biologic-experienced patients who had self-reported moderate to severe CD, were under the care of a specialist, and agreed to film a video diary and participate in a focus group. Data from the videos and group interviews were collected from May to June of 2009 and summarized qualitatively by grouping similar answers and quotations.
Results: Of the 44 participants who submitted video diaries, 23 were biologic-experienced and 21 were biologic-naïve. Participants stated that CD caused fear and embarrassment, that they were reluctant to share the full impact of CD with family and providers, and that they relied on their provider for treatment decisions. Many participants accepted a new state of normalcy if their current medication helped their most bothersome symptoms without providing sustained remission. Participants receiving biologic therapy generally were more informed, more satisfied, and more likely to adhere to treatment regimens.
Conclusion: Participants’ responses suggest a need for more patient education and more collaborative relationships between patients and providers (physicians) regarding treatment decisions.

Keywords: Crohn’s disease, patient perspective, quality of life