Quality of Life Assessment in Spina Bifida for Children (QUALAS-C): Development and Validation of a Novel Health-related Quality of Life Instrument

Szymański, Konrad M.; Misseri, Rosalia; Whittam, Benjamin; Yang, David Y.; Raposo, Sonia-Maria; King, Shelly; Kaefer, Martin; Rink, Richard C.; Cain, Mark P.

doi:10.1016/j.urology.2015.09.027

Cited by 37 publications

(33 citation statements)

References 27 publications

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“…Overuse of bladder reconstruction procedures is of concern due to the significant potential morbidity and expense of surgery; underuse is problematic as well, as incontinence can have a detrimental impact on patients’ quality of life. 7, 8 The objective of this study was to describe current patterns of care among NSBPR centers regarding bladder reconstruction, including the patient characteristics that are associated with likelihood of surgery. Our exploratory, secondary aim was to evaluate variation in surgical patterns, with adjustment for possible differences in case mix.…”

Section: Introductionmentioning

confidence: 99%

Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry

et al. 2018

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Section: Introductionmentioning

confidence: 99%

Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry

et al. 2018

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“…The study protocol was similar to that used to develop and validate QUALAS versions for adults (QUALAS-A) [16] and children (QUALAS-C) [17].…”

Section: Methodsmentioning

confidence: 99%

“…QUALAS-T is the third and final of a set of short, age-specific HRQOL instruments meant to be selfadministered by people with SB. Both QUALAS-C (Children: 8-12 years old) and QUALAS-T have two domains of 5 items each [17]. QUALAS-A (Adults: ≥18) has three domains of 5 items each [16].…”

Section: Enrollment Of Teenagers Into the Study Teenagers Were Enromentioning

confidence: 99%

Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida

Szymański

Misseri

Whittam

et al. 2017

CEJU

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Introduction We aimed to develop and validate a self-reported QUAlity of Life Assessment in Spina bifida for Teenagers (QUALAS-T). Material and methodsWe drafted a 46-question pilot instrument using a patient-centered comprehensive item generation/refinement process. A group of 13-17 years olds with spina bifida (SB) was recruited online via social media and in person at SB clinics (2013)(2014)(2015). Healthy controls were recruited during routine pediatrician visits. Final questions were identified based on clinical relevance, factor analysis and domain psychometrics. Teenagers with SB completed the validated generic Kidscreen-27 instrument. Results Median age of 159 participants was 15.2 years (42.0% male, 77.4% Caucasian), similar to 58 controls (p ≥ 0.06). There were 102 online and 57 clinic participants (82.8% of eligible). Patients, parents and an expert panel established face and content validity of the 2-domain, 10-question QUALAS-T. Internal consistency and test-retest reliability were high for the Family and Independence and Bladder and Bowel domains (Cronbach's alpha: 0.76-0.78, ICC: 0.72-0.75). The Bladder and Bowel domain is the same for QUALAS-T , QUALAS-A for adults and QUALAS-C for children. Correlations between QUALAS-T domains were low (r = 0.34), indicating QUALAS-T can differentiate between distinct HRQOL components. Correlations between QUALAS-T and Kidscreen-27 were also low (r ≤0.41). QUALAS-T scores were lower in teenagers with SB than without (p <0.0001). Conclusions QUALAS-T is a short, valid HRQOL tool for adolescents with SB, applicable in clinical and research settings. Since the Bladder & Bowel domains for all QUALAS versions are the same, Bladder and Bowel HRQOL can be measured on the same scale from age 8 through adulthood.

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“…To evaluate in a systematic way whether the goals of individuals with neurogenic bladder are being met, several quality of life assessment tools have recently been evaluated including QUALAS-A [ 66 ] and QUALAS-C [ 67 ••] designed for adults and children with spina bifida as well as adolescent specific bowel [ 68 ] and bladder [ 69 ] functional measurement instruments. Although a complex relationship exists, qualitative interviews of youth and parents published in the past year reiterated the effect of continence on quality of life through greater independence and opportunities for social participation reported in children with minimal versus higher volume incontinence [ 70 ].…”

Section: Achieving Long-term Goals: Quality Of Life Assessment and Trmentioning

confidence: 99%

The Management of the Pediatric Neurogenic Bladder

Cheng

2016

Curr Bladder Dysfunct Rep

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Neurogenic bladder is a heterogeneous entity that may result from a variety of conditions affecting the central or peripheral nervous systems. Regardless of etiology, the overall goals of management are primarily twofold. As a neurogenic bladder may affect the ability to store urine safely and to empty the bladder efficiently, early management is focused on optimization of bladder storage function to prevent irreversible injury to either the upper or lower urinary tracts. In older children, this goal is added to the challenge of maximizing quality of life through achievement of urinary continence and independence in bladder management that continues into the transition to adulthood.In this review, we seek to bring the reader up-to-date regarding management of the pediatric neurogenic bladder with a focus on literature published in the past year. We discuss key contributions related to fetal intervention for myelomeningocele, monitoring and medical management of the neurogenic bladder and prediction of postoperative outcomes. Put together, these studies highlight the continued need for further research to improve evidence-based medical and surgical decision-making strategies for children affected by neurogenic bladder.

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Quality of Life Assessment in Spina Bifida for Children (QUALAS-C): Development and Validation of a Novel Health-related Quality of Life Instrument

Cited by 37 publications

References 27 publications

Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry

Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry

Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida

The Management of the Pediatric Neurogenic Bladder

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