Diagnostic Scores, Questionnaires and Quality-of-Life Measures in Paediatric Continence
The process of providing clinical care to a child or adolescent with continence issues is essentially about targeting the patient’s concerns whilst balancing scholarship. In the case of children, it is equally about impacting what matters to the family. A
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Diagnostic Scores, Questionnaires and Quality-of-Life Measures in Paediatric Continence Wendy F. Bower
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Introduction
The process of providing clinical care to a child or adolescent with continence issues is essentially about targeting the patient’s concerns whilst balancing medical care. In the case of children, it is equally about impacting what matters to the family. Aspects of lower urinary tract dysfunction (LUTD) that bother the child do not necessarily correlate with the severity of incontinence and commonly differ from issues of concern to the patient or caregiver. Engaging the child or young person in identifying their needs at the outset of treatment is associated with improved quality of interactions and higher levels of satisfaction [1] that in turn predict better treatment compliance [2–4]. Patient goal-setting has been well described; the process identifies patient expectations and treatment outcomes that are most significant to each individual [5]. Some authors describe the patient and family’s view of care provided as an indicator of quality and health system performance [6–8]. Routine intervention that prioritizes the child and targets their concerns improves their journey through the healthcare system. Children will usually answer unambiguous questions truthfully; when pertinent or goal-oriented issues are raised, the patient’s voice can typically be heard. Efficacy can be evaluated and outcomes of care become transparent. In order for specific results or effects to be demonstrable, measurement must capture what matters. If we want to hear the continence details from the child or young person, and understand and quantify current bladder and bowel function, enquiry must be carefully framed. Self-report of bladder and bowel variables is notoriously unreliable, largely due to recall bias, downplaying, catastrophizing or anxiety about the problem. An understanding of the extent of symptoms, and their impact, can rarely be derived from verbal or proxy report. W.F. Bower, FACP,PhD,Dip EpiBio,BAppSc(PT) Division of Medicine and Community Care, Melbourne Health, Melbourne, VIC, Australia e-mail: [email protected] © Springer International Publishing AG, part of Springer Nature 2018 G. Mosiello et al. (eds.), Clinical Urodynamics in Childhood and Adolescence, Urodynamics, Neurourology and Pelvic Floor Dysfunctions, https://doi.org/10.1007/978-3-319-42193-3_3
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Table 3.1 Potential pitfalls of new metrics Problematic characteristic Unvalidated tool
No reliability data reported
No proven sensitivity Unacceptable to patients
Not relevant to your patients Complex scoring ± challenging interpretation
Limitation to clinical usefulness • May not measure what it is meant to • May not have been tested in specific patient populations • Data obtained may not be stable over time • Unknown whether it will reproduce responses when administered by different clinicians • The measure has not been shown to change with improvement in patient condition • Too long/complicated
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