Abstract
Abstract Background The Crohn’s Disease Exclusion Diet (CDED) with partial enteral nutrition can induce remission in patients with mild-to-moderate Crohn’s disease. As adherence is the key of (possibly) success of a medical therapy and CDED might be a complicated diet to perform, we aimed to investigate patients’ experience with CDED and the available tools (Modulife programme) to improve patientcare. Methods All mild-to-moderate active Crohn’s disease (CD) (adult and pediatric) patients treated with CDED as nutritional therapy as part of their medical treatment at Amsterdam UMC between 2019-2022 were approached for this retrospective qualitative study. A structured telephone interview was conducted by a dedicated dietician/doctor with the patients and/or parent/guardian in case of children. Questions about CDED-experience and Modulife program were either measured with the NET Promotor Score (NPS -100 - +100), as yes/no answer options or with 5-point likert scales (1=strongly agree/always to 5=strongly disagree/never). Lastly, patients were asked to evaluate the effectiveness of CDED on complaints and experience on a scale from 0-10. Results 44 patients (33 pediatric/11 adults; 26 women) participated in the interviews. The majority (61%) of the pediatric patients started CDED at diagnosis. The remaining 39% started 1-11 years (median 3[IQR 2-5]) after diagnosis at an age of 7-17 years (median 15[IQR 12-16]). 91% of the adult patients started CDED 3-37 years (median 11[IQR 4-28]) after diagnosis and only 1 immediately after diagnosis at an median age of 48 [IQR 33-60] (range: 19-69). The majority of the pediatric participants would recommend CDED to others (77%) and consider to start the diet again (55%). All of the adults would recommend CDED to others and consider to start CDED again. The NPS scores on CDED experiences are shown in figure 1. The median score for the effect of the diet on complaints was 8[IQR 5-9] (range 0-10) and 7[IQR 6-7](range 2-8.5) for experience. The majority of the patients (75%) used the Modulife program always or often during therapy and did (strongly) agree that the Modulife program was helpful. A NPS of 31 was given for recommending the app to others. The recipes-feature was the most used and most esteemed part of the app and was assessed with a good NPS of 27 for recommendation to others. Conclusion The majority of the pediatric and all of the adult participants would recommend CDED to others and would reconsider starting the diet again. CDED is better assessed by adults (positive NPS) then children and/or their parents (negative NPS). Most of the patients, assess the Modulife programme very positively and the majority would rate this as helpful in performing the diet.
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