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Quality of life in patients postcolectomy for pediatric-onset ulcerative colitis
Deepal H Dalal1, Dana Patton, Janet M Wojcicki
1Department of Pediatrics, University of California, San Francisco, CA 94143-0136, USA.
Insights
Pediatric ulcerative colitis patients who had colectomy at a younger age reported better quality of life (QOL). However, colectomy impacted sexual health and fertility in some young adults.
Area of Science:
- Pediatric surgery
- Gastroenterology
- Quality of Life Research
Background:
- Ulcerative colitis (UC) significantly impacts children's quality of life (QOL).
- Colectomy is a treatment option for severe pediatric UC.
- Long-term QOL outcomes after colectomy in children are not well-established.
Purpose of the Study:
- To evaluate the long-term quality of life (QOL) in pediatric patients who underwent colectomy for ulcerative colitis.
- To assess bowel function and reproductive health post-colectomy.
- To identify factors associated with higher QOL in this population.
Main Methods:
- Retrospective review of 16 patients who underwent colectomy for UC before age 20.
- Utilized the Inflammatory Bowel Disease Questionnaire-32 (IBD-Q32) for QOL assessment.
- Administered additional questionnaires on bowel function and reproductive health.
Main Results:
- Younger age at colectomy, diagnosis, and survey correlated with higher QOL.
- Patients aged 18 or younger at survey reported better emotional health, social function, and overall QOL.
- Pouchitis recurred in 12.5% of patients, severely affecting QOL.
- Sexual activity and fertility were reduced, particularly in females.
Conclusions:
- Younger age at colectomy, diagnosis, and survey are linked to improved QOL after surgery for pediatric ulcerative colitis.
- Key areas of satisfaction include school, work, and social engagement.
- Pouchitis remains a concern for a subset of patients.
- Colectomy can lead to decreased sexual function and fertility challenges in young adults.
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.
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