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.
Department of Pediatrics, University of California, San Francisco, CA.
Address correspondence and reprint requests to Melvin B. Heyman, MD, MPH, Division of Pediatric Gastroenterology, Hepatology, and Nutrition, University of California, 500 Parnassus Ave, MU 4-East, Box 0136, San Francisco, CA 94143-0136 (e-mail: firstname.lastname@example.org).
Received 2 November, 2011
Accepted 28 February, 2012
Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Website (www.jpgn.org).
Funding support came from National Institutes of Health grants DK060617 (D.H.D., E.A.G., M.B.H.) and DK080825 (J.M.W.)
The authors report no conflicts of interest.
Pediatric patients with chronic ulcerative colitis (UC) experience frequent disease flares, regular doctor visits, long-term care, occasional procedures, hospitalizations, and interruption of life plans that can have a negative effect on their quality of life (QOL) (1–3). Surgical resection of the large intestine offers a “cure” for their disease. Surgery is typically performed when a patient remains symptomatic or has complications of the disease despite ongoing, often intensive medical therapy (4,5). Colectomy is often performed in patients who desire to ultimately eradicate their disease due to poor response to medical management (6). Colectomy can restore patient health from acute or chronic disease and minimize the risk of cancer of the large bowel in patients with UC (5).
To date, however, satisfaction limited and conflicting data of document patients with UC who undergo this major procedure when onset is during childhood. Chronic UC in children can have a negative effect on QOL. Evaluation of QOL postcolectomy may help physicians gain insight into the problems that arise after surgery. Health-related QOL improvements were seen as early as 1 month postoperatively (7). Studies in adults suggest that colectomy leads to improvement in QOL to levels similar to the general population (1,8,9). In an adult sample of 645 patients, 93% demonstrated a good QOL, mainly improving 1 year after surgery as patients return to a normal lifestyle (8).
We studied a subset of patients included in a previous retrospective study reporting postsurgery complications in 31 patients with UC at the University of California in San Francisco (UCSF) (10). We used a validated, disease-specific QOL questionnaire (11) to further describe different age groups at diagnosis and colectomy and associations with QOL in pediatric patients with UC.
Pediatric patients younger than 20 years at the time of colectomy with inflammatory bowel disease (IBD) who underwent colectomy between 1980 and 2005 at the UCSF Benioff Children's Hospital were recruited via mailed letters. Patients were identified by retrospective chart review in the UCSF Department of Surgery, Division of Pediatric Gastroenterology, Hepatology and Nutrition, and Health Information Management Systems (medical records).
All of the patients who were diagnosed as having UC before age 18 and who had a colectomy before their 20th birthday were eligible for enrollment. Twenty-eight patients deemed eligible for the study were mailed a letter describing the study and a consent form. Patients were then contacted by telephone to further explain the study. Updated contact information was not available for 5 patients, 7 patients did not respond to our mailing, and informed consent was obtained from 16. Following consent, the study coordinator completed the validated Inflammatory Bowel Disease Questionnaire for patients with IBD (IBDQ-32; McMaster University in Ontario, Canada) (11) and a supplemental questionnaire (see online-only Appendix, http://links.lww.com/MPG/A108) that addressed bowel function and reproductive health, developed by the authors. The same study coordinator administered all of the questionnaires via telephone. Additional data were collected by retrospective chart review. The project was approved by the UCSF Committee on Human Research.
IBDQ-32 was measured to assess 4 primary categories: bowel system (frequent stools, loose stools, abdominal pain), emotional health (irritability, anger, depression), systemic system (fatigue, difficulty sleeping, maintaining weight), and social function (attending social engagements, work, or school) (12). The IBDQ-32 addressed 10 bowel system, 5 systemic system, 12 emotional function, and 5 social function questions. 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. The maximum possible scores in each system were as follows: 70 for bowel systems, 35 for systemic systems, 84 for emotional function, and 35 for social function. We reported patient's total QOL scores based on classification by Meyer et al (≥200 = excellent, 101–199 = good or regular, ≤100 = bad) (13). Two additional categories, bowel anastomosis function (pouchitis, accidental leakage, urge for defecation) and reproductive health (infertility, conception, sexual function), were included in a supplemental questionnaire that included quantitative questions such as number of children and episodes of pouchitis. Subjects younger than 18 years at the time of the survey were interviewed the same as other participants except they were not asked questions regarding sexual function. Data were analyzed using the Mann Whitney U rank sum test. Results are presented as median and interquartile range (IQR).
Demographics and Patient Characteristics
A total of 16 patients (6 boys) were enrolled in the study. Thirteen patients (81.3%) were white and 3 (18.7%) were African American. The survey was administered at a median age of 20.3 years (17.9–25.3) and 6.9 (IQR 4.8–9.0) years postcolectomy. Five patients were 18 years or younger at the time of survey (Table 1).
Children who underwent colectomy and were diagnosed ages 12 years or younger had slightly (nonsignificantly) higher QOL. QOL scores were not associated with age at the time of colectomy or age at diagnosis (Tables 2 and 3). Years postcolectomy associated with QOL systems did not yield significant results. Patients ages 18 years or younger at the time of survey showed higher QOL in all of the categories, significance achieved in emotional health (P = 0.020), social function (P = 0.014), and overall QOL (P = 0.009) (Fig. 1).
Total scores were 173.0 (IQR 154.5–186.8, total range 58–210). Two patients (12.5%) had overall IBDQ scores of ≥200, 12 (75.0%) had scores of 101 to 199, and 2 (12.5%) had scores ≤100. According to the Meyer et al classification, 12.5% of patients had excellent QOL, whereas 12.5% had bad QOL. The youngest patient in our study, who was 3 years at diagnosis, 6 years at colectomy, and 10 years at survey, had the highest overall QOL score of 210 of the possible 224. No differences were found comparing boys and girls. Social function scored the highest of all the systems (median 7; IQR 4–7). Six of the 16 patients had a score of 7 across all of the social function questions, not found for any other system.
Ileal pouch-anal anastomosis (IPAA) total colectomy with a functional J-pouch was performed in 15 of 16 (93.8%) patients; 1 had a Hartmann pouch. A majority (13/16, 81.3%) of patients had hand-sewn anastomosis. Nine patients had an elective colectomy, and 7 had an urgent colectomy. Ten patients had either a laparoscopic or laparoscopic-assisted colectomy, whereas 6 had an open colectomy. Eight of 16 patients had a 1-stage, 5 had a 2-stage, and 3 had a 3-stage planned operation. None of the operative factors correlated with QOL.
The QOL questionnaire showed that 2 patients were concerned about having surgery after colectomy. All but 5 reported having at least 1 surgery since colectomy, and 1 patient had 11 surgeries. Six patients reported a small bowel obstruction postcolectomy; 1 had 10 episodes. These did not correlate with QOL.
Pouchitis was reported by 9 patients (56.3%). The 2 patients with overall QOL scores ≤100 had repeated episodes of pouchitis compared with the other 14 patients. One patient had 16 episodes of pouchitis (patient 1), whereas the other had 30 (patient 2) (Table 4). Both patients were African American. Patient 1 was male, 13 years at the time of colectomy and 33 at the time of survey. Patient 2 was female, 19 years at the age of colectomy and 24 at the time of survey. Patient 1 had a 3-stage total colectomy with ileostomy, whereas patient 2 had a 2-stage laparoscopic-assisted total colectomy with ileostomy. Both patients reported problems with fatigue, waking up in the middle of the night, and maintaining weight most or all the time (lowest systemic system scores).
Patient 2 was the only patient in our cohort who was older than 18 years (age 19) at the time of colectomy and had the greatest number of complications postcolectomy. The subject had 30 pouchitis episodes and 1 small bowel obstruction within 5 years postcolectomy. After 2 successful pregnancies before colectomy, the patient was unable to become pregnant postcolectomy and believed that colectomy had severely restricted sexual function. This patient had the lowest scores of 1 across all of the systemic system domains.
Sexual Activity and Childbearing Abilities
Seven female and 4 male patients were sexually active at the time of the survey. Of those 11, 6 female and 2 male patients believed that their sexual activity was somewhat to severely affected by their colectomy. The 2 male patients had feelings of impotence and decreased libido, whereas the 6 female patients experienced dyspareunia.
One female and 2 male patients had at least 1 child at the time of survey. The 2 male patients each had 1 child postcolectomy, but the female patient (patient 2) was infertile despite trying consistently and having 2 children before colectomy. Three female patients were trying to become pregnant at the time of survey and none of the male patients. Of the 3 women, including patient 2, who tried to have children after colectomy, none were able to successfully conceive a child. One woman became pregnant 4 times, each leading to a miscarriage.
Our study of 16 patients who underwent colectomy before 20 years of age showed that QOL was highest among children diagnosed and who underwent colectomy before 13 years of age compared with older patients. A younger age (≤18 years) at the time of survey also showed a significantly higher QOL. Highest satisfaction was found in ability to attend school, work, and social engagements. Pouchitis was an issue for most of the patients, 2 patients suffering from recurring episodes.
Our study, although small, supports previous reports of decreased sexual function, including fertility and rate of conception especially in females following IPAA for UC (14–18). Cornish et al (19) reported an increase from 12% to 26% of infertility rate following restorative proctocolectomy among 945 patients, and Waljee et al (20) reported a 3-fold increased risk for infertility in women with UC following IPAA. Our study showed that women may have difficulty conceiving and are potentially at increased risk for miscarriages. Sexual function was decreased in 2 of 4 sexually active male patients, but it did not seem to affect ability to conceive children, as reported by the 2 male patients who conceived children after colectomy.
Few previous studies have been published that investigate QOL for children who undergo colectomy. In 1 study, Richards et al (6) concluded that patients with chronic UC who undergo IPAA with a functional pouch have a 92% chance of a normal QOL. Hahnloser et al (21) reported a normal QOL for patients 15 years after IPAA. They also observed that 92% of patients stayed in the same employment, and 83% of patients’ work was unaffected by the surgery. Other investigators report that although patients with IPAA have a QOL similar to general healthy population, one-third of the patients with IPAA have bowel dysfunction that negatively affects their daily lives, with 65% having 5 to 10 bowel movements per day (22). Lichtenstein et al (1) elaborated further by stating that UC surgery does not constitute a cure, restore bowel function or QOL to normal levels, and can introduce additional negative problems with sexual function and fertility.
Data in adults suggest that patients after surgery have improved QOL (1,6,8,13,21). Our study found that younger age at the time of colectomy, diagnosis, and survey shows better QOL than older age. Females have lower sexual function and fertility, whereas males have decreased sexual function but appear capable of conceiving a child. Pouchitis appears to detract from improved QOL overall.
Patients considering colectomy as treatment for UC lack knowledge of QOL on a long postoperative period (5 years, 6–10 years, 11–15 years, and ≥16 years after surgery). Our analysis was limited due to the small sample size and lack of longitudinal data and psychometric testing. We were also limited due to a varied patient population (age at survey, age at surgery) and that data were retrospectively collected with the possibility of recall bias. Certainly a larger longitudinal study to assess each patient's QOL before and after colectomy in childhood could improve the ability of patients and families to make the decision to undergo colectomy.
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