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

https://doi.org/10.1016/j.jpurol.2017.12.003Get 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)

  • J.M. Landgraf

    Precision and sensitivity of the short-form pediatric enuresis module to assess quality of life (PEMQOL)

    J Pediatr Urol

    (2007)
  • D. Nanigian et al.

    Development and validation of the fecal incontinence and constipation quality of life measure in children with spina bifida

    J Urol

    (2008)
  • I.M. Joensson et al.

    Transabdominal ultrasound of rectum as a diagnostic tool in childhood constipation

    J Urol

    (2008)
  • A. Rasquin et al.

    Childhood functional gastrointestinal disorders: child/adolescent

    Gastroenterology

    (2006)
  • M.L. Brandt et al.

    Validation of the Baylor continence scale in children with anorectal malformations

    J Pediatr Surg

    (2007)
  • A. von Gontard et al.

    Psychological and psychiatric issues in urinary and fecal incontinence

    J Urol

    (2011)
  • E. Van Hoecke et al.

    Early detection of psychological problems in a population of children with enuresis: construction and validation of the short screening instrument for psychological problems in enuresis

    J Urol

    (2007)
  • P.F. Austin et al.

    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

    (2014)
  • G. Gladh et al.

    Quality of life in neurologically healthy children with urinary incontinence

    Acta Paediatr Scand

    (2006)
  • H. Tokgoz et al.

    Assessment of urinary symptoms in children with dysfunctional elimination syndrome

    Int Urol Nephrol

    (2007)
  • Cited by (27)

    • 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
      Citation Excerpt :

      In addition, previously, it was necessary to demonstrate that symptoms were present before the age of seven [23] Currently, the age limit has been changed to 12 years [10]. The Short Screening Instrument for Psychological Problems in Enuresis (SSIPPE) [19] is a validated questionnaire for parents, mentioned by the International Society for Continence in Children (ICCS) [4,24]. It was structured based on the items with the highest score on the CBCL [16,17]/DBDRS [18] and features three scales, including seven items for emotional problems, three items for attention symptoms, and three items for hyperactivity/impulsivity symptoms [19].

    • Assessment instruments for lower urinary tract dysfunction in children: Symptoms, characteristics and psychometric properties

      2020, Journal of Pediatric Urology
      Citation Excerpt :

      In this regard, it was observed that six instruments showed good results of reliability [16,17,19,21–23]. In this sense, this review advances on another study of literature review on pediatric incontinence measurement instruments [5] and contributes to clinical practice since it presents and compares the processes of validation, reliability and accuracy of the instruments available for screening LUTD. Despite the efficiency and effectiveness of the databases consulted, limitations associated with the terminology used in the search and indexing problems, already highlighted in the literature, may have contributed to underestimating the instruments selected for this review.

    • Assessment and validation of a screening questionnaire for the diagnosis of pediatric bladder and bowel dysfunction

      2019, Journal of Pediatric Urology
      Citation Excerpt :

      Furthermore, these questionnaires have limitations in terms of patient interpretation, lack of ability to categorize BBD, and/or a lack of ability to evaluate the important metric of patient bother [7–10]. In addition, as the recent literature suggests, the current BBD instruments lack fundamental psychometric validation and reliability assessment [12,13]. The study questionnaire was administered and evaluated in more than 1200 patients.

    View all citing articles on Scopus
    View full text