Purpose: Health-related quality of life (HRQL) is not well studied in proctocolectomy patients with pediatric onset of ulcerative colitis (UC). We aimed to (1) compare the HRQL of proctocolectomy patients with those treated with conventional therapy and (2) determine factors that influence HRQL in UC patients < 18 years.
Methods: Chart review was done on patients diagnosed with pediatric onset of UC (<18) at the Stollery Children's Hospital. HRQL was evaluated in 88 patients using disease- and age-specific questionnaires; IMPACT III (<18) and Inflammatory Bowel Disease Questionnaire (IBDQ; ≥18). Demographics, disease characteristics, disease index (PUCAI), HRQL EuroQoL visual analog scale (EQ-5D/VAS) were collected and analyzed from all patients.
Results: Sixty-five respondents completed the IMPACT III (74 %) and 23 patients completed the IBDQ (26 %). Thirty-three surgical patients (34 %) responded (mean IMPACT III score = 148.9 ± 12.7; mean IBDQ = 171.2 ± 40.1). There was no significant difference in IMPACT III scores of surgical patients vs. medically treated patients (148.9 ± 12.7 vs. 140.6 ± 19.4, p = 0.09). Patients with high IMPACT scores (>143 points) were most likely to be in remission (p = 0.05), they were less likely to be on medication (p < 0.05), have parent/guardian with postsecondary education (p = 0.01), did not suffer from fatigue (p < 0.01), and did not report depression (p < 0.02). The IMPACT correlation with PUCAI (adjusted r (2) = 0.33) and EQ-VAS (adjusted r (2) = 0.45) was strong.
Conclusions: Surgical patients reported to have a HRQL comparable to or better than the nonsurgical patients. Depression, fatigue, parent/guardian education, and drugs influence HRQL.