PinQ: A valid, reliable and reproducible quality-of-life measure in children with bladder dysfunction

doi:10.1016/j.jpurol.2005.07.004

Journal of Pediatric Urology

Volume 2, Issue 3, June 2006, Pages 185-189

https://doi.org/10.1016/j.jpurol.2005.07.004 Get rights and content

Abstract

Objective

Recently, a cross-cultural continence-specific paediatric quality-of-life measurement tool (PinQ) has been developed and tested psychometrically. The aim of this study was to evaluate the test re-test reliability of this new tool in a cohort of children with bladder dysfunction in order to evaluate the reproducibility of scores. A secondary aim was to compare the parent-completed proxy version with child-reported scores.

Methods

PinQ was translated and back-translated from English into Chinese and Dutch and scrutinized for cultural and linguistic appropriateness or ambiguity. Forty children aged 6–15 years from both countries were asked to self-complete the measure at first consultation and then again 14 days later. No new treatment was implemented between data collection points. On the initial visit, parents also completed a proxy version of PinQ. Intraclass correlations (one-way random effects model) were used to analyze the data.

Results

The intraclass correlation coefficient (ICC) for comparison between items and factors showed little variability in scoring. One item was not reproducible and was removed from the tool. Overall proxy scores varied little from the child-reported scores. However, the impact on the child of his/her parent's concern about the bladder problem was poorly perceived (ICC = 0.18) as was the impact on the child's sense of self-worth (0.17).

Conclusion

PinQ has been shown to be reliable under test re-test conditions when completed by children from the age of 6 years. Proxy PinQ suggests that parents accurately evaluate the effect of bladder dysfunction on wellbeing in their children. A 20-item measurement tool will now be introduced clinically and subjected to sensitivity testing for treatment outcome and diagnostic grouping.

Introduction

Quality-of-life, which denotes a more general and holistic measure of wellbeing than disease impact [1], is a validated way of measuring a patient's perspective of his/her life situation [2]. Self-completion of a robust questionnaire communicates the individual child's perceptions and views, which may differ from those of his/her parents or clinicians. Recently a cross-cultural continence-specific paediatric quality-of-life measurement tool (PinQ) has been developed and tested psychometrically [3]. This new tool has the potential for use as an outcome measure and may also alert the clinician to compromised areas of wellbeing directly related to bladder dysfunction. A holistic treatment approach can address such psychosocial issues, facilitating child and family compliance, a factor known to be associated with positive treatment outcome.

The aim of this study was to evaluate the test re-test reliability of PinQ in a cohort of children with bladder dysfunction, in order to appraise the reproducibility of scores. A secondary aim was to compare the parent-completed proxy version with child-reported scores.

Section snippets

Subjects and methods

Forty children aged between 6 and 16 years (mean age 9.18 years, SD 2.65), who were attending a children's continence care service for management of a bladder disorder in either Holland or Hong Kong, were invited to participate in test re-test evaluation of PinQ. Ethics approval was obtained from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong.

The PinQ was translated into Chinese and Dutch by native-speaking bilingual health professionals. It was then

Results

Aside from one parent and one child who failed to complete the second page of PinQ, there were no missing values in the data set. As can be seen from Table 1, the ICC for comparison between total scores and factor scores showed excellent agreement [4]. Individual items showed excellent agreement in five cases (>0.7) and moderate agreement in 14 cases (0.4–0.7). One extrinsic item was not reproducible (ICC = 0.25, P = 0.063).

Overall, proxy scores varied little from the child-reported scores. Five

Discussion

This study has demonstrated that the new tool PinQ for use in children with bladder dysfunction gives reproducible responses and scores. Furthermore, it appears to be easily completed and, when attention is drawn to the two sides of the tool, the data sets are likely to be complete. Total scores and factor sub-scores all showed excellent test re-test reliability. One item “I wear clothes that will hide any wee accidents” was found to have a pronounced floor effect; that is, on initial testing

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Lower urinary tract symptoms (LUTS) affect approximately 10% of children worldwide and are related to psychosocial manifestations and compromised quality of life, both for children and their families. The assessment of emotional conditions of LUTS in children is recommended by International Children's Continence Society; however, there is no specific instrument in the Brazilian Portuguese language. Therefore, the aim of this study was to translate, culturally adapt and assess the internal consistency of the Brazilian Portuguese version of the Pediatric Incontinence Questionnaire (PINQ).
This cross-sectional study was performed at two referral centers for childhood voiding dysfunction. The 20-item PINQ was translated into Brazilian Portuguese and culturally adapted according to Beaton, 2000. His-standard methodology consists of 6 phases: translation, synthesis, back-translation, expert committee, and pre-test. The internal consistency was assessed using Cronbach's alpha.
The PINQ-br version was developed, validated by a committee of experts, and pre-tested on 44 children diagnosed with lower urinary tract symptoms, 23 boys and 21 girls (mean age: 9.7 and 9.6 years old respectively), as well as on their parents. The internal consistency was considered satisfactory, reaching Cronbach's alpha coefficient of 0.74 when applied to children and 0.82 when applied to parents.
The PINQ was translated and culturally adapted to Brazilian Portuguese to assess the impact of LUTS on the health-related quality of life in Brazilian children and adolescents.
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To assess the impact of parasacral transcutaneous electrical nerve stimulation (parasacral TENS) on quality of life (QoL) and psychological aspects in children treated for overactive bladder (OAB).
This international, multicenter, prospective cohort study involved individuals of 6–16 years of age under TENS treatment for OAB. The study was conducted between June 2016 and December 2019 in four participating centers: two in Australia, one in Germany and one in Brazil. Patients with anatomical and/or neurological abnormalities of the urinary tract were excluded. Questionnaires were applied before and after parasacral TENS treatment: the Dysfunctional Voiding Symptom Score (DVSS), used in Brazil, or the International Consultation on Incontinence Questionnaire - Pediatric Lower Urinary Tract Symptoms (ICIQ-CLUTS), used in Germany and Australia, to analyze urinary symptoms; the Strengths and Difficulties Questionnaire (SDQ) to assess emotional and behavioral aspects; and the Pediatric Incontinence Questionnaire (PinQ) for bladder-specific Qol.
Fifty-three patients (28 girls and 25 boys) with a mean age of 8.64 ± 2.63 years were included. Median DVSS was 11 (range 6–13.5) and 3 (range 0–7), (p < 0.001), and median ICIQ-CLUTS was 12 (range 9–14) and 9 (range 5.7–12), (p < 0.001), before and after treatment, respectively. Median PinQ score decreased from 47.8 (range 38.9–59.7) to 39 (range 29–53.15) following treatment (p = 0.04). Median total SDQ score before and after treatment was 17 (range 13.5–21) and 15 (range 12–21), respectively (p = 0.939).
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Genitourinary tract abnormalities affect approximately one-third of patients with 22q11.2DS. The most common include hydronephrosis, unilateral renal agenesis, multicystic dysplastic kidney, and hypoplastic kidney. Ureteral and bladder anomalies, such as vesicoureteral reflux and megaureter, have a lower incidence than renal anomalies, and the majority of urinary tract findings will resolve spontaneously without intervention. While genital abnormalities are less commonly identified than urinary anomalies, the incidence is higher in males compared with females. Most common genital findings in males are cryptorchidism and hypospadias, the majority of which are mild, and in females are absent vagina and/or uterus. Prevalence of lower urinary tract dysfunction (formerly called voiding dysfunction) in these children is likely higher than the general population due to associated developmental delay in children with 22q11.2DS, although exact estimates are unknown. Overall, given the higher rates of hydronephrosis, unilateral renal agenesis, and multicystic dysplastic kidney in patients with 22q11.2DS compared with the general population, all patients with 22q11.2DS should undergo screening with a renal/bladder ultrasound at time of diagnosis.
A randomised, double-blind, placebo-controlled clinical trial found that a novel herbal formula Urox® (Bedtime Buddy®) assisted children for the treatment of nocturnal enuresis
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Citation Excerpt :
It is a well-validated tool containing 20 items that measures the impact of NE on paediatric quality of life (Bower et al., 2006) and permission was granted by the author to use in this trial (Bower WF. 2017). The Pin-Q was completed by both the parent and the child (36) at baseline, week 4, and week 8 (Bower et al., 2006). The differences in Quality of Life was calculated 4-weekly based on differences from baseline at week 4 and week 8.
Nocturnal enuresis or ‘bedwetting’, is a form of night-time urinary incontinence occurring in younger children. A diagnosis can be socially disruptive and psychologically stressful for a child. The most common strategies used by parents are waking the child during the night to use the bathroom and limiting the child's water intake before going to bed.
To determine if a herbal capsule formulation taken once daily can reduce incidence and frequency of nocturnal enuresis in children.
This randomised double-blind placebo-controlled trial evaluated the efficacy of an herbal medicine product to reduce the symptoms of nocturnal enuresis. Participants, aged between 6 and 14 years of age, were recruited from the community in Australia. They were randomised via computerised random-number generation at study enrolment to receive one or two oral capsules in the morning of either Urox® (Bedtime Buddy®) or placebo. The Paediatric Quality of life (Pin-Q) was used as a quality-of-life measure and waking wet, fluid intake and urinary urgency per week were monitored.
Forty-one children completed the trial with an attrition rate of 16%. There were more males (64.6%) compared to females (35.4%) and the mean age was 8.6 years. Forty-one point seven percentages (41.7%) of participants had improvements in bed wetting by two months which was a highly clinically relevant effect (Cohen's D = 0.98). The primary outcome found that there was a statistically significant reduction in NE (p = 0.034; CI 0.086–2.095) and between groups using longitudinal analysis (p = 0.04, Coefficient -1.12, CI 95% -2.20 - -0.04). In the secondary outcomes, urinary urgency reduced statistically significantly for the intervention (p = 0.002; a reduction of 18.3% difference for Bedtime Buddy compared to an increase of 3.7% for the placebo).
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PinQ: A valid, reliable and reproducible quality-of-life measure in children with bladder dysfunction

Abstract

Objective

Methods

Results

Conclusion

Introduction

Section snippets

Subjects and methods

Results

Discussion

Eur Urol

J Pediatr

Quality of life measurements in children and adolescents: issues, instruments, and applications

J Clin Psychol

Symptom and quality of life assessment