Development and initial validation of a disease specific quality of life survey for children with vesicoureteral reflux.

PURPOSE: Vesicoureteral reflux is believed to be a largely asymptomatic condition. However, previous studies have failed to assess the precise impact of vesicoureteral reflux on quality of life. We created and validated a survey for assessment of quality of life in children with vesicoureteral reflux. MATERIALS AND METHODS: Two surveys were created by a team of pediatric urologists and survey design specialists, 1 for general assessment and 1 for postoperative assessment in patients undergoing surgical treatment for vesicoureteral reflux. Cronbach alpha test was used to assess internal consistency reliability and the correlation coefficient for test-retest analysis. Surveys were distributed from November 2008 to January 2010 during routine office visits for vesicoureteral reflux. The postoperative survey was distributed 8 to 20 weeks following surgery. RESULTS: The general survey yielded a Cronbach alpha of 0.64 and a correlation coefficient of 0.78, while the postoperative survey results were 0.58 and 0.84, respectively, for the same parameters. Complete general surveys were obtained from 216 patients. All but 4 categories, related to repeat testing, office visits and medicine intake, reached greater than 80% positive quality of life responses. The postoperative survey was completed by 104 patients. Bladder spasm was the only category with less than 86% rate of positive quality of life response. CONCLUSIONS: Vesicoureteral reflux is shown to have little effect on quality of life in pediatric patients. These validated surveys should be applied to compare the effect of different management options on quality of life.

Quality of life in children with vesicoureteral reflux.

Vesicoureteral reflux (VUR) is commonly diagnosed in children presenting with urinary tract infections. Antibiotic prophylaxis and ureteric surgery are standard treatments for these children. Our aim was to investigate whether health-related quality of life (HRQOL) was altered in children treated for VUR. Children aged 1-5 years with grade III or higher VUR were identified through electronic records at the Stollery Children's Hospital. Parents of these children were mailed the TNO-AZL Netherlands Organisation for Applied Scientific Research Academic Medical Centre Quality of Life (TAPQOL) questionnaire. QOL scores for this group were compared with normative controls from the instrument's creators using the Mann-Whitney U test. Thirty-two of the 96 (33%) mailed surveys were returned. Eight children had surgery, and 19 were treated with antibiotic prophylaxis. When comparing the VUR group with the control group, we found that anxiety and social functioning scores were significantly better in patients with VUR (p < 0.01). The VUR group had worse scores in problem behavior, stomach complaints ,and communication (p < 0.01). This study reveals that children with VUR have a reasonable QOL when compared with controls. However, the diagnosis of VUR and its management does have an impact on gastrointestinal complaints, behavior, and communication, which may occur as a result of chronic medical intervention.

[Long-term results after endoscopic subureteral injection for VUR using dextranomer/hyaluronic acid copolymer : a five years experience]. / Endoskopische Unterspritzung des vesikoureteralen Refluxes mit Dextranomer/Hyaluronsäure : 5-Jahres-Langzeitergebnisse.

BACKGROUND: A number of bulking agents have been used for the endoscopic correction of vesicoureteral reflux in children. We present the long-term results of endoscopic use of dextranomer/hyaluronic acid copolymer (Deflux) for VUR grade I-IV in children. PATIENTS AND METHODS: Between 2004 and 2008, 21 children underwent endoscopic subureteral injection of Deflux in 30 ureters as an outpatient procedure. Twelve children had a unilateral reflux (two duplicated systems) and nine had a bilateral reflux. The median age was 5 years (6 months to 14.9 years). Six weeks postoperatively a voiding cystourethrogram (VCUG) was performed. This study examined the disappearance of VUR and urinary tract infection (UTI) as well as the quality of life (parents' questionnaire) during long-term follow-up. RESULTS: No intra- and postoperative complications were noticed. In 25 ureters (83%) VCUG showed no VUR 6 weeks postoperatively. In three children a second injection was done (two were successful). After a median follow-up of 2.5 years 27 ureters in 17 children (90%) had no UTI and VUR. The results of the questionnaire regarding quality of life were very good in the successfully treated children and the parents would choose the same treatment option again. CONCLUSION: Subureteral injection of Deflux for children with VUR is an effective treatment option for VUR with a low complication rate.

Treatment of vesico-ureteric reflux: a new algorithm based on parental preference.

UNLABELLED: Authors from Rome evaluated parental preference for treatment in children with grade III VUR. Parents were provided with detailed information about the three treatment options: antibiotic treatment, open surgery, endoscopic treatment. Most parents chose endoscopic management; with this in mind, the authors proposed a new treatment algorithm for VUR. OBJECTIVE: To assess parental preference (acknowledged in treatment guidelines as important when choosing therapy) about treatments for vesico-ureteric reflux (VUR, commonly associated with urinary tract infection and which can cause long-term renal damage if left untreated), as at present there is no definitive treatment for VUR of moderate severity (grade III). SUBJECTS AND METHODS: The parents of 100 children with grade III reflux (38 boys and 62 girls, mean age 4 years, range 1-15) were provided with detailed information about the three treatment options available for treating VUR (antibiotic prophylaxis, open surgery and endoscopic treatment), including the mode of action, cure rate and possible complications, and the practical advantages and disadvantages. They were then presented with a questionnaire asking them to choose their preferred treatment. RESULTS: Most parents preferred endoscopic treatment (80%), rather than antibiotic prophylaxis (5%) or open surgery (2%); 13% could not decide among the three options and endoscopic treatment was recommended. CONCLUSION: Given the strong preference for endoscopic treatment we propose a new algorithm for treating VUR; endoscopic treatment would be considered as the first option for persistent VUR, except in severe cases where open surgery would still be recommended.

Mothers' evolving relationships with doctors and nurses during the chronic childhood illness trajectory.

AIMS: In this paper the evolution of mothers' relationships with doctors and nurses during the chronic childhood illness trajectory is explored and discussed and the implications for child health care are considered. The discussion reports one aspect of a qualitative study that sought to determine whether time of diagnosis influenced mothers' coping across the illness trajectory. BACKGROUND: The quality of relationships between mothers, who are usually the primary carers, and nursing and medical staff is central to the experience of coping with chronic childhood illness. Mothers need to develop expertise in a wide range of technical skills and knowledge of complex health care issues, while also coming to terms with the uncertainty of a condition with an unpredictable trajectory. Attempts to understand the significance of relationships between those living with chronic illness and staff have highlighted a number of factors that may influence the degree to which they are viewed as satisfactory. The way staff communicate with families has been identified as one of the mediating processes through which the quality of such is determined. DESIGN: Mothers of 15 children diagnosed presymptomatically and 14 children diagnosed postsymptomatically with the chronic illness Vesicoureteric Reflux (VUR) were interviewed to assess and compare coping strategies across the trajectory. Mothers' written consent was obtained and interviews were tape-recorded, transcribed and analysed using the 'Framework Technique'. FINDINGS AND CONCLUSION: The need to develop and sustain trusting relationships with staff was reported as a continual source of stress for mothers. The formation of satisfactory alliances, based on mutual respect and good communication early in the trajectory, in particular during the prediagnostic phase, was found to be instrumental in coping and competence development during the later chronic phase of the trajectory. Further research is needed to map prospectively the evolution of relationships between mothers and staff across the trajectory.