Transition of urologic patients from pediatric to adult care: a preliminary assessment of readiness in spina bifida patients.

OBJECTIVE: To assess the awareness and readiness of both spina bifida patients and parents regarding the transition process before transitioning, with a secondary aim that included identifying potential factors associated with successful transition. METHODS: All children aged ≥14 years requiring long-term care were prospectively enrolled. Questions designed by pediatric and adult urologists and an adolescent health specialist addressing the awareness of long-term follow-up and the desire to learn more about transitioning were administered by nursing staff at regularly scheduled clinic appointments. All spina bifida patients evaluated in the past 5 years were identified, and clinical factors associated with transitioning were compared. Statistical analysis using the Fisher exact test and the chi-square test were used to compare patients' and parents' responses and categorical variables between patients transitioned and those eligible. P <.05 was considered significant. RESULTS: A total of 33 surveys were prospectively collected. Twenty-two percent of parents and 40% of patients said they never wanted to transition (P = .28). Parents had thought about transitioning more than the patients (88.9% and 40%, respectively; P = .002). Of the 97 patients eligible for transition, 34% had a transition plan. The only significant predictor of transitioning to adult care was a previous history of stones (P = .03). CONCLUSION: Transitioning to adult urologic care is a necessity for many, and parents are significantly more aware of transitioning than the patient. Acknowledging and understanding the concerns of patients and families will help optimize the transition to adult urologic care.

Long-term urological impact of fetal myelomeningocele closure.

PURPOSE: Between 1997 and 2002 a large number of fetal myelomeningocele closures were performed at our institution. Previously early reports showed little improvement in neonatal bladder function after fetal back closure. We evaluated the long-term urological impact of this procedure. MATERIALS AND METHODS: Using a combination of retrospective review and survey questionnaire we reviewed the records of 28 patients in whom fetal myelomeningocele closure was done at our institution between 1997 and 2002. The areas addressed included medical management for neurogenic bladder and bowel, need for lower urinary tract reconstruction and functional bladder assessment by videourodynamics. Parameters after fetal myelomeningocele closure were compared to those of 33 age and sex matched patients with myelomeningocele who underwent standard postnatal closure. RESULTS: We reviewed the records of 28 patients after fetal myelomeningocele closure. At a mean age of 9.6 years 23 used clean intermittent catheterization to manage the bladder, 24 required a bowel regimen to manage constipation and 6 underwent lower urinary tract reconstruction with enterocystoplasty and a catheterizable bladder channel. Videourodynamics performed in 14 patients at a mean age of 7.4 years revealed decreased bladder capacity in 71%, detrusor overactivity in 35% and increased detrusor pressure in 25%. Compared to age and sex matched children who underwent postnatal closure we noted no significant differences in bladder management, urinary tract surgery or urodynamics. CONCLUSIONS: Neurogenic bowel and bladder management continues to be a significant issue for patients after fetal myelomeningocele closure. After fetal surgery patients should be followed closely, similar to patients who undergo postnatal closure.

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.

High yield of urodynamics performed for refractory nonneurogenic dysfunctional voiding in the pediatric population.

PURPOSE: In the pediatric population urodynamic evaluation for nonneurological causes has been previously reported as a low yield endeavor when considering patients with a primary diagnosis of dysfunctional voiding. We evaluated the rate of clinically significant urodynamic findings that would drive therapeutic intervention for a spectrum of urological disorders in pediatric patients without neurological deficit in whom initial conventional management had failed. MATERIALS AND METHODS: We retrospectively reviewed the charts of patients who had undergone urodynamics in the last 7 years. Patients with known neurological deficits were excluded. RESULTS: A total of 805 pediatric urodynamic evaluations were performed from December 1997 to July 2004 at our institution, including 89 in patients with no known neurological diagnosis and charts available for review. Of the urodynamic studies 33 (37.1%) were reported as normal and 56 patients (62.9%) had clinically significant discoveries. Storage phase abnormalities were the predominant finding in 37 patients (66.1%), including uninhibited detrusor contractions in 31 (55.4%). Emptying phase abnormalities were less common (19 patients or 33.9%). There was no difference in the percent of patients with positive urodynamics findings depending on sex. CONCLUSIONS: In our analysis evaluation of all recent urodynamics performed at a single institution revealed a high rate of pathological findings in patients with various nonneurological diagnoses.

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 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 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.