Diagnostic scores, questionnaires, quality of life, and outcome measures in pediatric continence: A review of available tools from the International Children's Continence Society

doi:10.1016/j.jpurol.2017.12.003

Journal of Pediatric Urology

Volume 14, Issue 2, April 2018, Pages 98-107

https://doi.org/10.1016/j.jpurol.2017.12.003 Get rights and content

Summary

Purpose

We reviewed and collated information concerning the available tools for the measurement of symptoms and outcomes in pediatric continence.

Materials and methods

MEDLINE, EMBASE, and CINHAL databases were searched for relevant articles published prior to December 2016 and independently screened by two researchers. Expert opinion was also widely sought through consultation with the ICCS Board membership and their professional networks and the multidisciplinary authorship group. The most relevant materials were then selected for analysis and inclusion and resulted in a document available on the ICCS website for all members to review. Insights and feedback were considered with consensus and agreement reached to modify the document.

Results and conclusions

A variety of useful tools for the assessment and measurement of bladder and bowel dysfunction and quality of life and behavioral comorbidities are presented together with their indications and potential pitfalls. ICCS cannot recommend one over another as the most useful for each clinician will vary depending on the clinical setting, available time, and patient population. We provide a framework for choosing those that are most appropriate based on our findings.

Section snippets

Purpose

This document complements other ICCS standardization documents by summarizing all published symptom scores, questionnaires, and outcome measures relevant to pediatric incontinence.

Robust tools provide a reliable and efficient way for researchers and clinicians to understand many aspects of function or problems, but they do not provide a diagnosis. They allow us to measure the effects of our interventions. Providing professional accountability for effective and efficient outcomes, patient

Overview

Self-report of bladder and bowel variables is notoriously unreliable, largely because of recall bias, downplaying, catastrophizing, or anxiety about the problem. An understanding of the extent of symptoms, and their impact is best measured with robust clinical tools that quantify baseline variables and track changes over time. Table 1 summarizes some of the pitfalls to avoid when choosing a measure to capture clinical variables. Moreover, it is critical that a clinician or researcher be aware

Lower urinary tract symptoms (LUTS) and lower urinary tract dysfunction (LUTD)

In 2001 Sureshkumar developed and tested the reliability of a structured, parent administered questionnaire to determine the prevalence of, and risk factors for daytime urinary incontinence in children; however, there are no questions regarding bowel function, and although the questionnaire had good test-retest reliability, it was not designed or evaluated for its discriminative properties, that is its ability to differentiate between normal and abnormal voiding patterns [5]. More recently, the

Quality of life

Aspects of lower gastrointestinal and urinary tract dysfunctions that bother the child do not necessarily correlate with severity of his/her incontinence, and commonly differ from issues of concern to the patient or caregiver. An understanding of the impact of bladder issues on the child and family cannot readily be gained from symptom scores; instead health-related quality of life (QoL) should be assessed. Although generic pediatric QoL measures exist, there are few disease-specific tools for

Bowel dysfunction

There are not many tools for assessing/measuring constipation and/or fecal incontinence – some are validated and some are not.

A 2-week bowel diary completed prospectively by the child and family will clarify frequency of both bowel actions and FI episodes. Additional information that can be derived from this measure includes stool shape and consistency, whether the stool was spontaneous or prompted, any straining, bleeding, or pain while passing the stool, and episodes of stool refusal or

Behavioral comorbidities

Clinical psychological disorders can interfere with treatment of continence disorders leading to lower compliance and adherence, as well as worse outcomes. Questionnaires cannot render formal diagnoses, instead these are useful clinical tools that screen for relevant behavioral problems and disorders that may interfere with treatment.

The high rate of comorbid behavioral disorders has led the ICCS to recommend screening with a broad-band, validated questionnaire, assessing a wide range of

Discussion

Information about available questionnaires for use in children with bladder and or bowel dysfunction is summarized in Table 2. We suggest that clinicians compile a bank of tools that suit the different populations and purposes encountered in their practice. Thus for differential diagnosis one of the symptom scores would be needed. For assessment of severity of LUTS, the availability of both a urinary measure and a combined measure would be ideal. Understanding the impact of presenting symptoms

Summary

In this document we present a range of tools that can be used for assessment and measurement of symptoms in childhood incontinence, including known characteristics, uses, and shortfalls. There are tools that differentiate children with bladder and bowel dysfunction from those without, some that evaluate LUTS, or bowel dysfunction or combined bladder and bowel dysfunction, those for quality of life or behavioral problems.

Often the simple tools such as bowel and bladder diaries provide enough

Conflict of interest

None.

Funding

None.

Acknowledgment

We thank Professor Stuart Bauer for proof reading this manuscript, and making suggestions.

References (40)

P. Sureshkumar et al.
A reproducible pediatric daytime urinary incontinence questionnaire
J Urol
(2001)
M. De Gennaro et al.
Validity of the international consultation on incontinence questionnaire-pediatric lower urinary tract symptoms: a screening questionnaire for children
J Urol
(2010)
W.F. Bower et al.
A novel clinical evaluation of childhood incontinence and urinary urgency
J Urol
(2001)
W.F. Bower et al.
Variability in normative urine flow rates
J Urol
(2004)
W. Farhat et al.
The dysfunctional voiding scoring system: quantitative standardization of dysfunctional voiding symptoms in children
J Urol
(2000)
C. Akbal et al.
Dysfunctional voiding and incontinence scoring system: quantitative evaluation of incontinence symptoms in pediatric population
J Urol
(2005)
J. Upadhyay et al.
Use of the dysfunctional voiding symptom score to predict resolution of vesicoureteral reflux in children with voiding dysfunction
J Urol
(2003)
B.A. Drzewiecki et al.
Use of validated bladder/bowel dysfunction questionnaire in the clinical pediatric urology setting
J Urol
(2012)
D. Schneider et al.
Evaluation of consistency between physician clinical impression and 3 validated survey instruments for measuring lower urinary tract symptoms in children
J Urol
(2011)
C.P. Nelson et al.
Incontinence symptom index-pediatric: development and initial validation of a urinary incontinence instrument for the older pediatric population
J Urol
(2007)

Cited by (27)

Translation, cross-cultural adaptation and validation of the Short Screening Instrument for Psychological Problems in Enuresis for use in Brazil (SSIPPE-Br)
2024, Jornal de Pediatria
Enuresis is associated with attentional and emotional comorbidities in 20 to 30 % of cases. The Short Screening Instrument for Psychological Problems in Enuresis (SSIPPE) is a questionnaire that allows the initial screening of these comorbidities. This study aimed to translate, culturally adapt, and validate the SSIPPE for Brazilian children and adolescents (SSIPPE-Br).
Six steps were performed for translation and cross-cultural adaptation: translation, synthesis of translations, back-translation, preparation of the pre-final version of the translated instrument, test of comprehensibility of the pre-final version of the tool, and elaboration of the instrument cross-culturally adapted for Brazil, named 13-itens version SSIPPE-Br. To validate the SSIPPE-Br, a cross-sectional study was carried out, in which the validated Brazilian version of the Child and Adolescent Behavior Inventory (CABI) was used.
Validation was performed on 127 children and adolescents with a mean age of 9.7 ± 2.8 years, 48 % male. The reliability was estimated using Cronbach's alpha, ranging from 0.86 to 0.89, indicating good internal consistency. The factorial analysis had a good agreement adjustment (KMO 0.755, Bartlett's test < 0.001) and explained 70.5 % of the data variability. In the reproducibility analysis, the Kappa coefficient ranged from 0.94 to 1, which can be considered almost perfect. A highly significant (p-value < 0.001) and direct correlation existed between the three SSIPPE-Br domains and all evaluated CABI domains.
The SSIPPE-Br is a valid and reliable tool for emotional problems screening and ADHD symptoms in children and adolescents with enuresis whose first language is Brazilian Portuguese.
Sonographically Determined Fecal Width: An Objective Indicator of Management of Bladder and Bowel Dysfunction in Children
2024, Urology
To test whether sonographically determined fecal width (SDFW) correlates with symptom improvement in a population of children with bladder and bowel dysfunction (BBD) managed with standard urotherapy (SU), even for those patients lacking initial bowel complaints.
We retrospectively analyzed 200 pediatric BBD patients managed with SU for at least 3 months. Self-reported symptom improvement (complete, partial, no response) following International Children’s Continence Society guidelines was tabulated. Patients with complex urologic diagnoses other than vesicoureteral reflux (VUR) were excluded. Pharmacotherapy choice, physical therapy (PT), urinary tract infection (UTI) occurrence, and VUR status were tabulated. SDFW was recorded. Non-parametric analysis of variants (ANOVA) and parametric/non-parametric t testing were used for analysis.
Patients had a mean age of 9.5 years (4-12). Forty-eight patients had no gastrointestinal complaints at presentation. Urotherapy yielded complete, partial, and no responses in 14% (n = 27), 33% (n = 67), and 53% (n = 106) of patients, respectively. The average SDFW for those patients with complete response (2.6 cm) was smaller than the SDFW of those with a partial response (3.1 cm) or no response (3.3 cm) (P = .0001). Non-compliance led to greater SDFW compared to compliant patients (3.7 cm and 3.1 cm, respectively, P = .0001). Fecal width was unaffected by VUR, UTI, PT, or pharmacotherapy.
SDFW correlates well with symptom improvement in pediatric patients managed for BBD, confirming our hypothesis. SDFW is reasonable as single objective parameter to identify successful management in patients with BBD, extending to those without bowel complaints at presentation.
Accuracy of the short screening instrument for psychological problems (SSIPPE) in enuresis in the Identification of attention-deficit/ hyperactivity symptoms in the enuretic population
2022, Journal of Pediatric Urology
Enuresis prevalence is approximately 5–15% in children aged 6–7 years. The presence of attention deficit hyperactivity disorder (ADHD) in enuretic children is associated with 3 times greater risk of persistent enuresis. The Multimodal Treatment Study for ADHD (MTA) Swanson, Nolan, and Pelham version IV (SNAP-IV) is one of the most used instruments to evaluate ADHD symptoms, but it is a time-consuming questionnaire.
This study aims to compare the accuracy of an easy questionnaire named Short Screening Instrument for Psychological Problems in Enuresis (SSIPPE) to MTA-SNAP-IV in identifying ADHD symptoms in children and adolescents with enuresis.
ADHD symptoms screening was performed by applying SSIPPE and MTA-SNAP-IV in 160 children and adolescents with enuresis, aged 6–14 years, who regularly attended a specialized clinic for pediatric urology.
A total of 153 individuals with enuresis were included in the study (52% males), among them 55 (35.9%) were considered positive for inattention and hyperactivity-impulsivity by the MTA-SNAP-IV. Sensitivity for SSIPPE concerning MTA-SNAP-IV was 85.5%, and specificity was 84.7%, with an overall accuracy of 85% in identifying ADHD symptoms.
In the present study, we found high accuracy of SSIPPE in relation to MTA-SNAP-IV in identifying ADHD symptoms in the enuretic population, with substantial agreement between instruments. Its sensitivity and specificity were considered high for a screening method. However, there are some limitations. The population studied is composed of a group of children with enuresis, which can lead to an overestimation of the test's accuracy, as the disorder under investigation is more prevalent in this population. This can be explained by the high specificity of the test (84.7%) associated with the fact that the SSIPPE is an instrument tailored for an enuretic population, unlike the MTA-SNAP IV.
The SSIPPE has proven to be a reliable tool in identifying ADHD symptoms in the enuretic population. In addition to being a quick and easily applicable instrument.
Translation and cross-cultural adaptation of the Childhood Bladder and Bowel Dysfunction Questionnaire (CBBDQ)
2021, Jornal de Pediatria
Citation Excerpt :
In the particular case of the CBBDQ, in addition to defining the severity of BBD, improvement in scores throughout treatment has a motivating effect on the children and their families.8,9 Farhat et al.5,10 developed the first symptom scoring system in this field of study, the Dysfunctional Voiding Scoring System (DVSS), an instrument with 10 questions on urinary symptoms and only 2 questions for the evaluation of constipation, which is insufficient for the assessment of BBD. The DVSS was translated into several different languages, including Brazilian Portuguese.11
To translate and cross-culturally adapt the Childhood Bladder and Bowel Dysfunction Questionnaire (CBBDQ) for use in Brazilian Portuguese. The CBBDQ is an 18-item tool covering 10 bladder and 8 bowel symptoms that was developed for use with children of 5 to 12 years of age with bowel and bladder dysfunction (BBD). The instrument has already been validated for use in Dutch and English.
In the process of translation and cultural adaptation from English to Portuguese, the CBBDQ was submitted to undergo the required steps as established by the international methodological criteria: forward translation, synthesis, back-translation, expert panel review and pre-testing.
Ninety-three parents of children with lower urinary tract dysfunction answered the questionnaire. The mean age of the children was 7.6 ± 2.1 years and 54 were female. Internal consistency was excellent, with a Cronbach’s alpha of 0.91 to 0.96. Additionally, reliability was high, with an intraclass correlation coefficient of 0.94 (95%CI: 0.85-0.93; p < 0.0001).
The translation and cultural adaptation of the CBBDQ enabled a quantitative evaluation of bladder and bowel symptoms to be performed in Brazilian children. The scores achieved allow the severity of BBD to be evaluated, as well as the patient’s progress during treatment. The use of this questionnaire in clinical practice and research will allow more consistent data on BBD to be obtained.
Assessment instruments for lower urinary tract dysfunction in children: Symptoms, characteristics and psychometric properties
2020, Journal of Pediatric Urology
Citation Excerpt :
Likewise, the use of valid and reliable assessment instruments for LUTS is fundamental for both the pediatric urology clinic and for research as it assists the comparison of studies and reduces the confusion between the results. The International Children's Continence Society (ICCS) has reinforced the need for standardized terminology for symptoms of lower urinary tract dysfunction and advises on the use of robust assessment instruments to measure the effects of clinical interventions [4,5]. As a result, the use of LUTS assessment instruments has increased mainly when it comes to pediatric urology.
The use of instruments to assess symptoms of the lower urinary tract has increased mainly when it comes to pediatric urology. The search for a validated and reliable one for use in clinical practice should be a concern of the professionals involved in the care of these children.
The aim of this study was to analyze the assessment instruments for lower urinary tract dysfunction in children regarding: symptoms, characteristics and psychometric properties.
PubMed and Latin American and Caribbean Literature in Health Sciences databases were searched. The PICO strategy was used to construct the research question and bibliographic search. Keywords included voiding disorders, LUTS, Child, Surveys and Questionnaires.
Nine articles were identified. The construct observed by all instruments was bladder dysfunction and seven instruments also assessed bowel dysfunction. Thirty different events were addressed. In eight instruments the respondents are the parents. The age of the target population ranged from three to eighteen years and regarding the number of items, an average of 21.8 items was observed. Six instruments showed good results of reliability and four presented good results of accuracy.
The instruments included a wide range of symptoms related to dysfunction. Only two reported all validation and reliability tests, however six instruments showed good reliability results, making them eligible for the cross-cultural adaptation and validation process for use in countries other than those of the instrument's origin.
Assessment and validation of a screening questionnaire for the diagnosis of pediatric bladder and bowel dysfunction
2019, Journal of Pediatric Urology
Citation Excerpt :
These BBD questionnaires were validated using small sample sizes and may not specifically quantitate common pediatric BBD symptoms [7–11]. The limitations and gaps with the available BBD instruments, regarding their psychometric testing and suspect validation, have recently been highlighted in the literature [12,13]. Previously, the authors used the Vancouver Non-Neurogenic Lower Urinary Tract Dysfunction/Dysfunctional Elimination Syndrome Questionnaire (NLUTD/DES) questionnaire in their practice [14].
Pediatric bladder and bowel dysfunction (BBD) is a common problem in children. However, the current ability to diagnosis and quantify pediatric BBD is limited as only a few validated instruments exist. In addition, the current questionnaires are limited by their lack of psychometric processing and methods of validation. To address these issues, the authors developed a new questionnaire to objectively diagnose pediatric BBD symptoms. This study aimed to evaluate the performance of this newly devised objective instrument in diagnosing and quantifying the symptomatology of BBD in children.
An 18-item, 5-point questionnaire was developed using both a literature review and expert opinions. The total questionnaire score could range from 0 to 72. Questions were subgrouped into six symptom categories: (1) nocturnal enuresis, (2) lower urinary tract symptoms, (3) urinary holding, (4) infrequent urination, (5) bowel symptoms, and (6) daytime urinary incontinence. The questionnaire also assessed the degree of bother associated with the symptoms. Patients were divided into cases and controls, and these two groups were compared.
A total of 1265 new patients (758 cases and 507 controls) completed the new BBD questionnaire. The mean age of the whole study cohort was 9.5 years (range, 3–19 years). The total mean questionnaire score was significantly higher at 23 (3–58) in the cases, compared with 8 (0–35) in the controls (p < 0.001) (Summary Figure). Reliability analysis of the 18-item instrument showed a Cronbach's alpha reliability coefficient of 0.80 for the scale.
This new instrument provides a valid and reliable method for diagnosis of pediatric BBD and classification of patients into subcategories of BBD based on their specific symptoms.

View all citing articles on Scopus

View full text

Review ArticleDiagnostic scores, questionnaires, quality of life, and outcome measures in pediatric continence: A review of available tools from the International Children's Continence Society

Summary

Purpose

Materials and methods

Results and conclusions

Section snippets

Purpose

Overview

Lower urinary tract symptoms (LUTS) and lower urinary tract dysfunction (LUTD)

Quality of life

Bowel dysfunction

Behavioral comorbidities

Discussion

Summary

Conflict of interest

Funding

Acknowledgment

J Urol

J Urol

J Urol

J Urol

J Urol

J Urol

J Urol

J Urol

J Urol

J Urol

J Pediatr Urol

J Urol

J Urol

Gastroenterology

J Pediatr Surg

J Urol

J Urol

The standardization of terminology of lower urinary tract function in children and adolescents: update report from the Standardization Committee of the International Children's Continence Society

J Urol

Quality of life in neurologically healthy children with urinary incontinence

Acta Paediatr Scand

Assessment of urinary symptoms in children with dysfunctional elimination syndrome

Int Urol Nephrol

Review Article
Diagnostic scores, questionnaires, quality of life, and outcome measures in pediatric continence: A review of available tools from the International Children's Continence Society