Abstract
Introduction: Patients with Crohn’s disease (CD) may require home parenteral nutrition (HPN) because of malnutrition, or extensive bowel resection, resulting in short bowel syndrome (SBS). We sought to estimate the cumulative incidence of HPN use in a population-based cohort of CD, and to describe clinical outcomes. Methods: The resources of the Rochester epidemiology project, a linked diagnostic index, have been used to identify all Olmsted County residents diagnosed with CD between 1970 and 2011. Patients with CD who were enrolled in our institution’s HPN program were identified, and their medical records were reviewed. The cumulative incidence of HPN use from time of CD diagnosis was estimated using the Kaplan-Meier technique. Descriptive statistics were used to evaluate clinical outcomes. Results: A total of 429 county residents were diagnosed with CD between 1970 and 2011. Eleven CD patients received HPN between 1976 and 2012. Four of these patients were incidence cases. The cumulative incidence of HPN use from CD diagnosis was 0.5% at 1 year (95% confidence interval [CI], 0-1.2%), 0.5% at 5 years (0-1.2%), 0.9% at 10 years (0-1.9%), and 1.5% at 20 years (0-3.2%). Among the 11 receiving HPN, 91% were females. Eight (72%) had moderate-to-severe CD. The ileum was affected in 91%, colon in 73%, and proximal GI involvement in 9%. Ten patients had fistulizing disease. Nine patients underwent surgery at least once in the county, and indications included obstruction (82%), fistulizing disease (36%), severe pain (27%), bleeding (18%), necrosis (18%), and abdominal abscess (18%). Median number of bowel resections was 2 (range, 0-7). Nine patients (81%) had an ostomy. The median duration of HPN was 1,137 days (range, 42-4,027). Indications for HPN included SBS in 54%, malnutrition in 27%, and bowel rest in 18%. Each patient had a mean of 5 hospitalizations since the start of their HPN. Seven patients (63%) had catheter-related bloodstream infections, and 2 (18%) had a thrombosis. Only 1 patient required insulin while on HPN. The patients received a mean nutrition of 22.3 Kcal/kg per day. There was a median body weight increase of 0.8 kilograms (kg) at 6 months after the start of HPN, and a median weight loss of 5.4 kg at 1 year. Five patients (45%) remained on HPN at time of last follow-up. Only 1 patient died due to CD. Conclusion: Less than 4% of CD patients need HPN. Most patients on HPN have undergone surgery with placement of a stoma. Half the patients were started on HPN due to SBS and one-third due to malnutrition. Fifty-five percent were able to discontinue HPN. Interestingly, patients lost a median of 5 kgs after 12 months of HPN. Perhaps this was due to noncompliance or perhaps improvement in albumin resulted in mobilization of fluid.
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