Quality of Life in Pediatric Patients Who Underwent Colectomy for Ulcerative Colitis

Abstract

BACKGROUND: Chronic ulcerative colitis in children can have a negative impact on quality of life (QOL). Prior studies in adults suggest that colectomy leads to improved measures of QOL. AIM: To determine QOL in pediatric patients who underwent colectomy for ulcerative colitis. METHODS: All patients under 20 years of age who underwent colectomy for ulcerative colitis between 1980 and 2005 at UCSF Children's Hospital were recruited. Of 31 patients contacted, 16 completed the validated QOL Questionnaire for patients with inflammatory bowel disease (IBDQ-32; McMaster University in Ontario, Canada) and an additional questionnaire that addressed bowel function and reproductive health. Each question was rated on a scale of 1 (“all of the time”) to 7 (“none of the time”); total scores ranged from 32 to 224, higher scores indicating a better QOL. Data are presented as Mean±SD. RESULTS: Age at the time of diagnosis was 11.2±3.7 (range 3 to 16) years. Age at colectomy was 13.3±3.7 (6 to 19) years. All but 5 had at least one surgery since colectomy; one had 11 surgeries. Twelve patients (75%) reported no increase in frequency of bowel movements. Pouchitis was reported by 9 (56.3%). The survey was administered 8.7±6.2 (2 to 24) years postcolectomy. Total scores were 159.7±43.3 (58 to 210). Two patients (12.5%) had overall IBDQ scores of ≥200, ten (62.5%) had scores of 151-199, two (12.5%) had scores of 101150, and two (12.5%) had scores ≤100. The two patients with scores ≤100 had repeated episodes of pouchitis (16-30 episodes) compared with the other 14 patients (0-3 episodes). Systemic symptoms (fatigue, difficulty sleeping, and maintaining weight) had the lowest scores (4.2±1.9). Social function (attending social engagements, work or school) had the highest scores (5.6±2.0), and 6/16 patients (37.5%) had scores of 7 (maximum) across all social function questions, which was not found for any other system. Patients continuing to have loose bowel movements had the lowest overall scores (3.6±2.2, range 1-7). Patients with no or minimal rectal bleeding had the highest scores (6.5±1.2, range 3-7). Children who underwent colectomy before 14 years of age had higher scores (better QOL), and children diagnosed before 12 years of age had better QOL than children diagnosed at age ≥12 years (QOL: 5.5±1.0 vs 4.3±1.6). QOL relating to sexual function was highly rated (5.4±2.1; range 2-7). CONCLUSIONS: Measures of QOL in pediatric patients undergoing colectomy for ulcerative colitis show highest QOL scores in social function. Younger age at time of colectomy and of diagnosis, specifically under 12 years of age, leads to greater improvement of QOL. Complications determined by recurrent surgeries or fecal soiling are common, but only pouchitis appears to detract from improved overall QOL.