Long-term Quality of Life of Patients With Permanent End Ileostomy: Results of a Nationwide Cross-Sectional Survey

Background: Patients with permanent end ileostomy are at high risk for detrimental stomal effects on their quality of life. However, little is known about the long-term quality of life of these patients. OBJECTIVE: The purpose of this study was to assess long-term quality of life in patients with permanent end ileostomy. DATA SOURCES: Registration at the German self-help organization ILCO was used for this study. STUDY SELECTION: Selection included a cross-sectional survey of 1434 patients with permanent end ileostomy. MAIN OUTCOME MEASURES: Quality of life was assessed using the Medical Outcomes Study Short Form 36, including physical and mental component summary scores, the Gastrointestinal Quality of Life Index, and the Cleveland Global Quality of Life Index. Multivariate risk factor analysis was performed. RESULTS: A total of 783 responders were included. Indications for ileostomy included ulcerative colitis (44%), Crohn's disease (38%), and colorectal cancer (7%). Adverse effects on daily life because of stoma were reported by 72% of participants. Quality of life was significantly impaired compared with the general population on all of the summary scores and several subscales (physical component summary: 44.6 +/- 10.4 (mean +/- SD) vs 50.2 +/- 10.2, p < 0.001; mental component summary: 47.5 +/- 10.7 vs 51.5 +/- 10.2, p < 0.001; Gastrointestinal Quality of Life Index: 94.4 +/- o 16.4 vs 126.0, p < 0.001). Stoma care problems affecting quality of life were reported by 63% of respondents. These included parastomal hernia (p < 0.001), stenosis (p = 0.003), and prolapse (p = 0.008). Vitamin B 12, iron, and zinc deficiencies were also associated with diminished quality of life; in particular, vitamin B 12 deficiency was associated with reduced mental and emotional quality of life. LIMITATIONS: Not all patients undergoing ileostomy in Germany are registered at ILCO, and there were many nonresponders. In addition, the inherent limitations of cross-sectional studies should be considered, including the response-shift phenomenon. CONCLUSIONS: Quality of life was markedly impaired in patients with permanent end ileostomy as compared with the general population. The main reasons were stoma-associated morbidity and nutritional deficiency syndromes. These findings highlight the importance of prevention, screening, and adequate treatment.