Health-related quality of life after 5-12 years of continent ileal urostomy (Kock reservoir) in children and adolescents.

Abstract

To assess quality of life after continent ileal reservoir diversion in children and adolescents. Nine boys and 9 girls (10.8-18 years old at surgery) were operated with a Kock reservoir and followed for 5-12 years. They participated in an interview using a questionnaire based on the Swedish self-esteem inventory, "I think I am". The questionnaire consisted of 76 questions that covered medical, physical, psychological, social, body image and sexual aspects. Six of 18 patients had some difficulties on catheterization. Five complained of pain or bleeding during evacuation. Two patients had slight urinary leakage between evacuations and 6 had mucus secretion. Ten patients had diarrhea with different frequencies. Physical activities were not hampered by the operation in any patient. Instead, activities such as full day outside home, friend at home overnight, using all types of clothes, and participation in camps were increased in 8, 6, 5 and 5 patients, respectively. All patients but 2 had an excellent relation with friends and family members. More than half of patients had excellent positive self-esteem and body image and the rest had very good self-esteem. However, some patients were concerned about how they looked and felt that life was unfair to them. The patients were satisfied with their operation. They were physically active and declared a positive perspective regarding self-esteem and body image. The medical problems related to the operation did not have any negative influence on the self-esteem or body image. The choice of the operation can only be determined on the basis of an attentive dialogue between surgeon, child and parents.