Using patients’ experiences with enema design to improve quality of life in patients with IBD

Nadine van Dongen,1 Ad A Kaptein21Patient Intelligence Panel, London, United Kingdom; 2Medical Psychology, Leiden University Medical Centre, Leiden, The NetherlandsPurpose: To gain insight from people in The Netherlands with inflammatory bowel disease (IBD) on their experiences with enema use, and their views on the use of enemas and mode of enema delivery.Methods: A total of 112 patients from The Netherlands with physician-diagnosed Crohn's disease, ulcerative colitis, or other intestinal problems completed an online questionnaire of 24 questions. These included: sociodemographic and clinical characteristics, enema use, adherence, perceived advantages/disadvantages of enema use, ideal enema design, and patient views on medication, and on drugs and medical care in general. All respondents had personal experience with enema use and were members of the Patient Intelligence Panel. The Medication Adherence Report Scale and Beliefs about Medicines Questionnaire were also used to assess patient responses.Results: Respondents reported overall satisfaction with their last enema use (4.3 on a scale of one to seven), with the main reasons for dissatisfaction being difficulty of administration and pain. Perception of enema convenience was rated 3.3 on average; one-fifth of respondents gave the lowest rating of “very problematic.” Three distinct improvements for enema design were suggested. Respondents were generally neutral or positive in their beliefs on enema medication, but were more neutral to negative in their views of drugs and prescribing in general.Conclusion: Real-life data on the views of patients with inflammatory bowel disease towards enema use are limited. Patients in this study were aware of the importance of adherence with their enema, but mainly did not regard it as convenient or easy to administer, and reported discomfort with enema use. Enema design was deemed by respondents as worth improving, and suggested improvements aimed to improve comfort with enema delivery. Adherence scales may be a valuable means of assessing views on medication in patients with inflammatory bowel disease.Keywords: inflammatory bowel disease, enema, adherence, quality of life, beliefs about medicines questionnaire