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.
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 diseasepatient 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.
Authors: Pritesh S Morar; James Hollingshead; Willem Bemelman; Nick Sevdalis; Thomas Pinkney; Graeme Wilson; Malcolm Dunlop; R Justin Davies; Richard Guy; Nicola Fearnhead; Steven Brown; Janindra Warusavitarne; Cathryn Edwards; Omar Faiz Journal: J Crohns Colitis Date: 2017-10-27 Impact factor: 9.071
Authors: Maria Ines Pinto-Sanchez; Shannon Gadowsky; Suzan McKenzie; Michael J Raphael; Anne Childs; Marroon Thabane; Suzanne Hansen; John K Marshall; David Armstrong Journal: J Can Assoc Gastroenterol Date: 2018-08-10
Authors: Ulrich-Frank Pape; Kishore R Iyer; Palle B Jeppesen; Marek Kunecki; Loris Pironi; Stéphane M Schneider; Douglas L Seidner; Hak-Myung Lee; John Caminis Journal: Therap Adv Gastroenterol Date: 2020-04-20 Impact factor: 4.409
Authors: Lauren K Schwartz; Stephen J D O'Keefe; Ken Fujioka; Simon M Gabe; Georg Lamprecht; Ulrich-Frank Pape; Benjamin Li; Nader N Youssef; Palle B Jeppesen Journal: Clin Transl Gastroenterol Date: 2016-02-04 Impact factor: 4.488