Prospective evaluation of health related quality of life for pediatric patients with ureteropelvic junction obstruction.

PURPOSE: Clinical practices are increasingly proposing health related quality of life measures for informed treatment decisions. Dismembered pyeloplasty is an accepted standard therapy for ureteropelvic junction obstruction. This study evaluates health related quality of life in patients with ureteropelvic junction obstruction undergoing pyeloplasty. Patients have perceived it helpful in communicating health care needs to physicians. We believe this is the first study to use child self and parent reports prospectively in ureteropelvic junction obstruction. The goals of the study were to document baseline preoperative health related quality of life assessments, differences between parent and child assessments at given intervals, differences in preoperative and postoperative assessments, and overall clinical outcomes.

MATERIALS AND METHODS: Patients younger than 18 years (mean 9.1 years) with ureteropelvic junction obstruction were included in the study. Demographic survey and validated health related quality of life questionnaire (Pediatric Quality of Life Inventory 4.0) were used preoperatively and postoperatively. The questionnaire documented subjective health related quality of life (physical, social, emotional and school functioning, and psychosocial health). Clinical outcomes were generated following the office visit. Questionnaire subscales were scored with algorithms provided. Paired t test evaluated differences in parent and child scores of less than 0.05 were statistically significant. Tests were 2-tailed.

RESULTS: Response rate was 100%. Preoperatively emotional functioning (81.8) and psychosocial health (80.9) child scores were significantly higher than parent scores (70.7 and 73.9, respectively). Overall child score of the study population (80.9) was similar to that of healthy children (85). However, parent scores of physical functioning (78.3), psychosocial health (73.9), emotional functioning (70.7) and school functioning (65.5) were significantly lower than the general population. At postoperative week 6 child emotional functioning (91.7) and physical functioning (90.3) showed significant improvement (p <0.05). Parent scores of physical functioning (88.4), psychosocial health (82.2) and emotional functioning (80.8) were also significantly higher than preoperative scores. Longer followup demonstrated that child scores of physical functioning (96.9), psychosocial health (96.5), emotional functioning (95.4) and social functioning (97.1) were significantly higher than preoperatively. Postoperatively parents reported significantly higher health related quality of life scores compared to preoperative scores. There was no significant difference at 6 months between parent and child scores. Clinically all patients did well following pyeloplasty.

CONCLUSIONS: Preoperatively children recorded higher health related quality of life than parents/guardians. At postoperative week 6 children and parents recorded higher health related quality of life compared to preoperative scores. At 6 months overall child health related quality of life was significantly higher than preoperative reports, and no significant difference was seen between parent and child scores. Health related quality of life evaluations enabled us to monitor patient recovery and progress postoperatively. Prospective evaluations at regular intervals helped us to document improvement in overall quality of life in these children.