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A systematic review to identify and assess parent-proxy and child self-reported questionnaires for pediatric urinary incontinence
Anthony J. Schaeffer, MD, MPH1, Erin R. McNamara, MD1, Ruth Strakosha, MD1, Karen A. Kuhlthau, PhD2, Stuart B. Bauer, MD1, Caleb P. Nelson, MD, MPH1.
1Boston Children's Hospital, Boston, MA, USA, 2Massachusetts General Hospital, Boston, MA, USA.

BACKGROUND:There is increasing interest in measuring patient-reported health status to evaluate symptoms and identify important outcomes of treatment. The purpose of this systematic review is to identify, describe, and critically assess questionnaires developed for children with urinary incontinence (UI).
METHODS:MEDLINE, EMBASE, and CINHAL were searched to identify articles pertaining to the initial development of questionnaires designed for pediatric UI. Search criteria included broad terms for UI, questionnaire, and appropriate subject age (toddler, child, pediatric, prepuberty, puberty, teen, adolescent).
Two reviewers independently screened all titles and abstracts and selected full text articles. Studies were included if they explicitly focused on the development of parent-proxy or child self-reported questionnaires to: (1) identify, diagnose, and/or grade UI or LUTS and (2) assess the impact of UI on a child’s mental health or health-related quality of life (HRQoL). Studies were excluded if they: (1) contained patients above 18 years, (2) were designed to identify the prevalence of UI in a particular population, (3) were only available in abstract form, (4) were physician administered, and/or (5) were published in a language other than English. References were screened for additional articles.
The characteristics of each questionnaire were abstracted, and the developmental methodologies and psychometric properties of each questionnaire were summarized.
RESULTS:The search yielded 4642 records. 36 articles were retrieved in full text for further assessment, of which 24 were excluded, leaving 12 as the primary source article for the development of a UI questionnaire.
Table 1 lists and describes the characteristics of these 12 questionnaires. Most were designed to assess urinary symptoms in those with functional UI and were not validated in children with anatomic or neurogenic etiologies for their UI. Eight questionnaires assessed bowel and bladder symptoms. Although 6 reports evaluated HRQoL, only three (the PINQ, PEMQOL, and Gladh’s questionnaire) did so comprehensively by asking more than 2 questions in this domain. No single questionnaire comprehensively assessed both symptoms and HRQoL. The SSIPPE was developed to screen for co-morbid mood disorders, attention deficits disorders, and hyperactivity in children presenting with incontinence.
Table 2 summarizes the developmental methodologies and psychometric properties of the questionnaires. If patient input, expert opinion, and literature review are viewed as the most robust development criteria, then most did not meet this standard. Validity and reliability were not uniformly tested.
CONCLUSIONS:In selecting a UI questionnaire, researchers and clinicians should ensure that the questionnaire was designed for and validated in their intended population. Two questionnaires will be needed to comprehensively assess symptoms and HRQoL.
Table 1: Pediatric Urinary Incontinence Questionnaire Characteristics
AuthorAbbreviationConstruct AssessedRespondentRecall PeriodDomains (no. items)Age Range (years)Population included [excluded] in development
Afshar
J Urol 2009
"Vancouver Scale"Bladder
Bowel
Child (10-16 years old)
Parent (4-9 years old)
NSPhysical (13)4-16Nonneurogenic LUT dysfunction [Anatomic anomaly, NGB, urologic surgery]
Akbal
J Urol 2005
DVISSBladder
Bowel
Impact of UI
ParentNSPhysical (13)
General HRQoL (1)
4-10Daytime UI, Enuresis [Anatomic anomaly, NGB, SB occulta]
Bower
Neurourol Urodynam 2006
J Pediatr Urol 2006
PINQ
"Pink"
Impact of UIParentNSSpecific HRQoL (20)6-16Daytime UI, Enuresis
De Gennaro
J Urol 2010
ICIQ-CLUTSBladder
Bowel
Child (10-18 years old)
Parent (5-9 years old)
Last monthPhysical (10)
(plus 2 unscored demographic items)
5-18Patients with LUTS [Anatomic anomaly, NGB, DM]
Farhat
J Urol 2000
DVSS
PLUTSS
"Toronto Scale"
Bladder
Bowel
Child
Parent (1 question)
Last monthPhysical (9)
Stressor (1)
3-10Daytime UI, Hx of UTI, BBD [Anatomic anomaly, NGB, SB occulta]
Gladh*
Acta paediatr 2006
NoneImpact of UIChildNSSpecific HRQoL (38)6-16Daytime UI, Enuresis
Kwak
J Urol 2008
NoneBladder
Bowel
Impact of UI
ParentNS
Ever...
Physical (8)
Stressor (1)
Medical History (1)
5-15Enuresis
[Anatomic anomaly, NGB]
Landgraf
Pediatrics 2004
J Pediatr Urol 2007
PEMQOLImpact of UIParentPast monthSpecific HRQoL (13)
Parental Impact (3)
5-14+Daytime UI, Enuresis
[Anatomic anomaly, NGB]
Bladder - bladder symptoms and severity; Bowel - bowel symptoms and severity; UI - urinary incontinence; NS - not specified; HRQoL - health related quality of life; LUTS - lower urinary tract symptoms; NGB - neurogenic bladder; SB - spina bifida; DM - diabetes mellitus *Graduate school thesis not available from publisher limiting full appraisal of this questionnaire.

Table 1 (cont.): Pediatric Urinary Incontinence Questionnaire Characteristics
AuthorAbbreviationConstruct AssessedRespondentRecall PeriodDomains (no. items)Age Range (years)Population included [excluded] in development
Nelson
J Urol 2007
ISI-PBladder
Bowel
Impact of UI
ChildPast monthPhysical (9)
General HRQoL (2)
11-17NGB, Enuresis, Daytime UI
Tokgoz
Int Urol and Nephrol 2007
NoneBladder
Bowel
Child
Parent (2 questions)
Past 3-6 monthsPhysical (13)
Stressor (1)
Medical Hx (1)
NSNonneurogenic LUT dysfunction, UTI [MNE, anatomic anomaly, NGB, CP]
Vajda
Pediatr Surg Int 2009
NoneBladder
Bowel
Orthopedic symptoms
ChildBefore surgery...
After surgery...
Physical (15)
Specific HRQoL (14)
(plus 4 'other' questions)
10-22NGB, Bladder Exstrophy
Van Hoecke
J Urol 2007
SSIPPEFactors influencing UIParentSometime...
Frequently...
Emotional problems (6)
Attention problems (3)
Hyperactivity (3)
6-12Enuresis
Bladder - bladder symptoms and severity; Bowel - bowel symptoms and severity; UI - urinary incontinence; HRQoL - health related quality of life; NGB - neurogenic bladder; LUTS - lower urinary tract symptoms; UTI - urinary tract infection; MNE - monosymptomatic nocturnal enuresis; CP - cerebral palsy

Table 2: Development Methodology and Psychometric Properties of Pediatric UI Questionnaires
Development
Methodology; Validity & Reliability Testing
AfsharAkbalBowerDe GennaroFarhatLandgrafNelsonVajdaVan Hoecke
Development:
Expert Opinion
YES--YESYES--YESYESYES--
Development:
Literature Review
YES----YES--YES------
Development:
Patient Input
YES--YES------------
Face ValidityYES----------YES----
Construct ValidityYES----YES----------
Discriminative ValidityYESYES--YESYESYESYES--YES
Internal ReliabilityYES--YESYES--YESYES----
Test-retest ReliabilityYES--YES------YES----
YES - indicates this was performed; Blank (--) cell indicates this property is not specified by article; Kwak and Tokgoz questionnaires had none and one component measured, respectively; Gladh's questionnaire was not available from the publisher and thus could not be assessed


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