title: Long-term Quality of Life of Patients With Permanent End Ileostomy: Results of a Nationwide Cross-Sectional Survey.
abstract: 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.
  
  
  METHODS
  Registration at the German self-help organization ILCO was used for this study.
  
  
  METHODS
  Selection included a cross-sectional survey of 1434 patients with permanent end ileostomy.
  
  
  METHODS
  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 ± 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 B12, iron, and zinc deficiencies were also associated with diminished quality of life; in particular, vitamin B12 deficiency was associated with reduced mental and emotional quality of life.
  
  
  CONCLUSIONS
  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.
authors.affiliation: 1 Department of General, Visceral, Transplantation, Vascular and Thoracic Surgery, Hospital of the University of Munich, Munich, Germany 2 Department of Medical Informatics, Biometry and Epidemiology, University of Munich, Munich, Germany 3 Deutsche ILCO e.V., Bonn, Germany 4 Department of General, Visceral and Vascular Surgery, University of Berlin-Charité, Campus Benjamin Franklin, Berlin, Germany.
authors.forename: Tobias S
authors.initials: TS
authors.lastname: Schiergens
authors.forename: Verena
authors.initials: V
authors.lastname: Hoffmann
authors.forename: Tamara N
authors.initials: TN
authors.lastname: Schobel
authors.forename: Gerhard H
authors.initials: GH
authors.lastname: Englert
authors.forename: Martin E
authors.initials: ME
authors.lastname: Kreis
authors.forename: Wolfgang E
authors.initials: WE
authors.lastname: Thasler
authors.forename: Jens
authors.initials: J
authors.lastname: Werner
authors.forename: Michael S
authors.initials: MS
authors.lastname: Kasparek
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003093:Colitis, Ulcerative / Q000601:surgery*; D015179:Colorectal Neoplasms / Q000601:surgery*; D003424:Crohn Disease / Q000601:surgery*; D003430:Cross-Sectional Studies; D003677:Deficiency Diseases / Q000453:epidemiology; D005260:Female; D005858:Germany / Q000453:epidemiology; D006555:Hernia, Ventral / Q000453:epidemiology; D006801:Humans; D007081:Ileostomy; D000090463:Iron Deficiencies; D008297:Male; D008875:Middle Aged; D011183:Postoperative Complications / Q000453:epidemiology; D011788:Quality of Life; D014806:Vitamin B 12 Deficiency / Q000453:epidemiology; D055815:Young Adult; D015032:Zinc / Q000172:deficiency
chemical_list: D015032:Zinc