title: Quality of life in patients postcolectomy for pediatric-onset ulcerative colitis.
abstract: BACKGROUND
  Ulcerative colitis in children can have a negative effect on quality of life (QOL).
  
  
  METHODS
  We included 16 of 31 patients who underwent colectomy for ulcerative colitis before 20 years of age between 1980 and 2005 at University of California in San Francisco Benioff Children's Hospital. A disease-specific QOL questionnaire (Inflammatory Bowel Disease Questionnaire-32), validated for adults, was used to determine QOL and an additional questionnaire addressing bowel function and reproductive health in long-term follow-up of these patients.
  
  
  RESULTS
  Median age at the time of survey was 20.3 years (17.9-25.3), and time postcolectomy was 6.9 years (4.8-9.0). Mean total score was 159.7 ± 43.3 (58-210). Two patients (12.5%) had scores of ≥ 200, 12 (75.0%) had 101 to 199, and 2 (12.5%) had ≤ 100. Patients ages 18 years or younger at the time of survey showed higher QOL, particularly in emotional health (P=0.020), social function (P=0.014), and overall QOL (P=0.009). Social function scored highest of all of the systems (median 7; interquartile range 4-7). Patients with scores ≤ 100 had repeated episodes of pouchitis (16-30) compared with the other 14 patients (0-3). Children who were diagnosed ages 12 years or younger tended to have higher QOL (p=0.072). Years postcolectomy did not correlate to QOL. Eleven patients were sexually active. Two males had feelings of impotence and decreased libido, and 6 females experienced dyspareunia. Three women tried unsuccessfully to conceive after colectomy. One woman became pregnant 4 times, each leading to miscarriage.
  
  
  CONCLUSIONS
  Younger age at time of colectomy, diagnosis, and survey show higher QOL. Highest satisfaction was found in ability to attend school, work, and social engagements. Pouchitis continued to be an issue for a small number of the patients, with 2 patients having recurring episodes that severely affected QOL. Patients reported decreased sexual activity and fertility at the time of survey due to colectomy, especially for females.
authors.affiliation: Department of Pediatrics, University of California, San Francisco, CA 94143-0136, USA.
authors.forename: Deepal H
authors.initials: DH
authors.lastname: Dalal
authors.forename: Dana
authors.initials: D
authors.lastname: Patton
authors.forename: Janet M
authors.initials: JM
authors.lastname: Wojcicki
authors.forename: Ann L
authors.initials: AL
authors.lastname: Clark
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Garnett
authors.forename: Melvin B
authors.initials: MB
authors.lastname: Heyman
mesh_terms: D000022:Abortion, Spontaneous / Q000209:etiology; D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000367:Age Factors; D002648:Child; D003082:Colectomy / Q000009:adverse effects*; D003093:Colitis, Ulcerative / Q000150:complications / Q000523:psychology / Q000601:surgery*; D004414:Dyspareunia / Q000209:etiology; D007172:Erectile Dysfunction / Q000209:etiology; D005260:Female; D005298:Fertility; D005306:Fertilization; D006801:Humans; D015994:Incidence; D007398:Interpersonal Relations; D007989:Libido; D008297:Male; D008603:Mental Health; D011183:Postoperative Complications; D019449:Pouchitis / Q000209:etiology; D011247:Pregnancy; D011788:Quality of Life; D060728:Reproductive Health; D012737:Sex Factors; D012725:Sexual Behavior; D011795:Surveys and Questionnaires; D055815:Young Adult