Prospective, longitudinal evaluation of health related quality of life in the pediatric spina bifida population undergoing reconstructive urological surgery

Purpose: Spina bifida, the most frequent permanently debilitating birth defect, results in major urological problems of voluntary bladder control and bowel function, which may impair quality of life. We prospectively assessed quality of life in patients with spina bifida using child and parent reports simultaneously. This study had 3 goals, that is to 1) document baseline health related quality of life in patients with spina bifida preoperatively, 2) study health related quality of life, reporting differences between parents and children, and 3) study changes in health related quality of life prospectively at preoperative and postoperative intervals. Materials and Methods: Patients with spina bifida who were 2 to 18 years old and required reconstructive urological surgery in 2004 were included in the study. Demographic survey and the validated PedsQL (TM) 4.0 health related quality of life questionnaire were used preoperatively and postoperatively. A clinical outcomes data set was completed after the clinician saw the patient. PedsQL (TM) 4.0 subscales were scored using the algorithms provided. Results: The response rate was 100%. Mean participant age was 10.3 years. Preoperatively child physical and psychosocial health and school functioning were significantly higher than parent reports (p < 0.001). Overall health related quality of life in patients with spina bifida was lower than in healthy children (62.4 vs 85, p < 0.001). Six weeks postoperatively significant differences in health related quality of life reporting between parents and children had lowered. Six months postoperatively child emotional and social functioning scores were higher than parent scores (p < 0.001). No correlation was found between health related quality of life, and clinical and demographic factors due to insufficient sample size. Conclusions: Children with spina bifida recorded higher health related quality of life scores than parents/guardians. This health related quality of life study addresses concerns that impact daily quality of life in patients with spina bifida. Future health related quality of life studies in patients with spina bifida should use child self-reports.