Young Investigator: Inflammatory Bowel Disease Nurse in the Follow-Up of Patients From an IBD Program

Abstract

BACKGROUND: Inflammatory bowel disease (IBD) requires long-term treatment to keep disease control. A favourable follow-up of patients implies education, self-management and effective communication through a multidisciplinary team to achieve and preserve remission, where the IBD nurse acquires importance. The aim is to describe the role of an IBD nurse in the management and follow up of patients treated in an IBD Program in a tertiary center in Chile. METHODS: The IBD Program at Clínica Las Condes has a cohort of 1173 patients (July 2012–April 2017). In 2015, an IBD nurse was incorporated to the multidisciplinary team. From January 2016 on, all nurse contacts (telephone, mail and face-to-face) were registered. An observational descriptive study was designed, including all patients in follow-up during the period between January 2016-April 2017 (at least one follow-up medical visit during the year after the admission to the Program). The contacts made by the IBD nurse were classified as follows: reinforcement of medical indications, disease follow-up, lab results assessment, formal education on disease management (30 minutes session), administrative support, scheduling office visits and coordination of outpatient procedures and patient admissions. Demographic and clinical variables were also included in the analysis. Patient satisfaction with the IBD Program was assessed in a randomized sample of patients. RESULTS: 597 patients (51%) were in follow-up in the 16-month period; 63% diagnosed with ulcerative colitis, 27% with Crohn's disease and 10% with non-classifiable IBD, with a median age of 35 years (range 15-93). The median of disease duration were 5 years (range 0-42). The IBD nurse performed 760 contacts during the study period in 253 patients, representing 42% of the follow-up patients from the IBD Program. The most frequent nurse interventions were reinforcement of medical indications (42%), assessment of lab results (17%) and disease follow-up (12%). Almost half of the interventions were related to education (49%). Most of the contacts were made by mail (43%), followed by face-to-face (32%) and telephone (25%). Seventy seven percent of contacts were “nursing job”, the rest were administrative work. Nurse interventions were focused in more severely ill patients; when comparing patients who contacted the IBD nurse with those who did not, the first group presented more flares during the follow-up (37% vs 23%; P=0.0001), more biological therapy (15% vs 4%; P=0.0001), immunomodulators (40% vs 19%; P=0.0001) and steroids (14% vs 9%; P=0.0460). From a sample of 94 patients surveyed, 96% perceived the IBD program as excellent/good. CONCLUSION(S): The IBD nurse has an important role in the follow-up and management, specifically in education, of more severely ill patients with major need of guidance and a higher risk of adverse events due to IBD treatment. This study allowed to determine that the IBD nurse was able to evaluate 40% of the patients of the program, meanwhile nearly one third of her time was occupied by administrative issues. Administrative personnel are necessary in order to enable the IBD nurse to more direct patient care. Finally, the vast majority of patients are satisfied with the presence of an IBD nurse in our Program.