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
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.
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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 UrologyCitation 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 UrologyCitation 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 UrologyCitation 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.