Carlsson E, Bosaeus I, Nordgren S
Department of Surgery, Sahlgrenska University Hospital, Sweden.
Clin Nutr. 2003 Oct;22(5):445-52. doi: 10.1016/s0261-5614(03)00042-6.
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.
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).
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.
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.
描述短肠综合征患者的生活状况，重点关注生活质量、担忧、顾虑及应对方式等方面。
28例患者（19例女性/9例男性）参与研究。平均年龄为54岁。8例接受家庭肠外营养（HPN）治疗。使用视觉模拟量表记录生活质量。采用简短健康调查问卷（SF-36）评估健康相关生活质量（HRQOL），并与匹配的对照组进行比较。使用炎症性肠病患者顾虑评定量表（RFIPC）评估顾虑。采用贾洛维茨应对量表（JCS 40）调查应对策略。
最大的顾虑是害怕成为负担、担心手术和精力丧失。与对照组相比，HRQOL显著降低。接受HPN治疗的患者对生活质量的评分低于未接受HPN治疗的患者。造口的存在似乎并未对生活质量产生负面影响，但造口患者表达了更多顾虑。对抗性应对方式使用最为频繁。
HPN组和非HPN组的HRQOL均较低。有造口并未对生活质量产生负面影响。害怕成为负担是整个研究组以及各亚组中最常表达的顾虑。这些信息应纳入对这些患者的护理中。
