Quality of life and concerns in patients with short bowel syndrome

Clin Nutr. 2003 Oct;22(5):445-52. doi: 10.1016/s0261-5614(03)00042-6.

Abstract

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 (19F/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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Aged
  • Anastomosis, Surgical / adverse effects
  • Chronic Disease
  • Female
  • Humans
  • Male
  • Middle Aged
  • Parenteral Nutrition, Home* / psychology
  • Quality of Life*
  • Short Bowel Syndrome / psychology*
  • Short Bowel Syndrome / therapy
  • Sickness Impact Profile
  • Surveys and Questionnaires