N04 Optimizing patient-reported outcome measurement in an IBD care pathway: results of the PROMOTION study
Authors: Lembrechts N , Louis S , Geerts K , Van Brantegem K , Derua J , Bossuyt P , Pouillon L ,   Imelda GI Clinical Research Center
Published: January 2025

Background

Patient-reported outcome measurements (PROMs) are essential for the clinical evaluation of patients and serve as a key quality indicator in IBD.1,2 Patient engagement is needed to collect PROMs, but often remains suboptimal. The PROMOTION (Patient Reported Outcome Measurement questiOnnaire intervenTION) study evaluated the response rate to PRO questionnaires before and after a patient empowerment intervention. Additionally we assessed the number of patients with IBD in PRO-2 remission in an entire cohort.

Methods

PROMOTION was a single-center, nurse-led prospective study, including all patients in follow-up within the designated IBD care pathway during the study period (January to September 2024). PRO questionnaires (PRO-2, IBD Disk, IBD Control) were sent before every (in-person or remote) ambulatory consultation, and bi-annual to patients in follow-up at the day clinic for IV therapy. The intervention was an information and empowerment campaign that took place in April 2024, aiming to improve patients’ insights in the use and importance of PROMs. Response rates (percentage of questionnaires returned with partial or complete answers) were evaluated three months before (period 1) until six months after (period 2) the intervention. Secondary outcomes included the number of patients in PRO-2 remission during follow-up (CD: abdominal pain ≤1 and stool frequency ≤3; UC: rectal bleeding =0 and stool frequency ≤1).

Results

A total of 1593 PRO questionnaires were sent to 811 individual patients during follow-up. Overall response rate was 58.6% (933/1593) (figure 1). Almost half (45%, 190/422) of the non-responders had low digital literacy. Responders and non-responders did not differ in mean (SD) age (47 (16) yrs responders vs. 51 (19) yrs non-responders) nor in type of follow-up (consultation vs infusion unit). There was no difference in the overall response rate in the periods before and after the intervention (period 1: 57.7% (335/581) vs period 2: 59.02% (598/1012); p=0.6; figure 2). Response rates in the first month after the intervention were, however, significantly higher than in the rest of the study period (71.8% (79/110) vs 57.6% (854/1483); p=0.004). PRO-2 remission was seen in 65.4% (323/494) of the total population who fully completed all questionnaires, with similar proportions seen in patients with CD (62.3%, 177/284) and UC (69.5%, 146/210; p=0.1).

Conclusion

Improving patient participation in the assessment of PROMs by a single patient empowerment intervention leads to good short-term but poor long-term results. A more continuous motivational approach with direct feedback to the patients warrants further investigation. Clinical remission, as targeted by STRIDE-II, was achievable in the majority of patients.

References

1.Turner D, Ricciuto A, Lewis A, et al. STRIDE-II: An Update on the Selecting Therapeutic Targets in Inflammatory Bowel Disease (STRIDE) Initiative of the International Organization for the Study of IBD (IOIBD): Determining Therapeutic Goals for Treat-to-Target strategies in IBD. Gastroenterology 2021;160:1570–83.

2.Fiorino G, Lytras T, Younge L, et al. Quality of Care Standards in Inflammatory Bowel Diseases: a European Crohn’s and Colitis Organisation [ECCO] Position Paper. J Crohns Colitis 2020;14:1037–48.