Quality of life and concerns in patients with short bowel syndrome

Background & aims: the life situation in patients with short bowel syndrome was described, with focus on aspects of quality of life, worries, concerns and coping. Methods: Twenty-eight patients (19 F/9 M) participated. Mean age was 54. Eight were on home parenteral nutrition (HPN). Quality of life was recorded using a visual analogue scale. Health-related quality of life (HRQOL) was assessed using Short Form 36 (SF-36) and compared with matched controls. Concerns were assessed using Rating Form of Inflammatory bowel disease patient concerns (RFIPC). Coping strategies were investigated using Jalowiec coping scale (JCS 40). Results: Greatest concerns were fear of being a burden, having surgery and loss of energy. HRQOL was significantly reduced compared to controls. Patients' receiving HPN rated quality of life lower than those without HPN. The presence of a stoma appeared not to influence quality of life negatively but stoma patients expressed more concern. Confrontational coping style was most frequently used. Conclusion: HRQOL was low both in the HPN group and the non-HPN group. Having a stoma did not affect quality of life negatively. Fear of being a burden was the most frequently expressed concern, in the whole group as well as in subgroups. This information should be integrated into the care of these patients. (C) 2003 Elsevier Ltd. All rights reserved.