RiBQQ Validation
B
Benjamin Whittam, MD
Primary Investigator
Enrolling By Invitation
8-17 years
All
Phase
N/A
350 participants needed
1 Location
Brief description of study
The PinQ is the highest quality, validated pediatric
health-related quality of life (HRQOL) questionnaire about “my bladder problem”
(Bower et al., 2006). This questionnaire is long (20 questions) and is not just
HRQOL, with about 40% of the questions about functioning (symptoms). It is
infrequently used in research, having only 21 references as of 2023. Most
importantly the questionnaire was developed only by urologists with no child or
parent involvement.
Detailed description of study
We propose to validate a short, clinically useful questionnaire exclusively capturing child-reported HRQOL informed by what children, parents and clinicians consider important. This will be using the Riley Bladder Quality of Life Questionnaire (RiBQQ) which consists of 22 questions for parents and 20 for children. The goal will be to make this questionnaire more concise (roughly 10 questions).
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Bladder, Riley
-
Age: Between 8 Years - 17 Years
-
Gender: All
Inclusion Criteria:
- Children with bladder dysfunction
- Normal cognitive function
- English proficiency and appropriate literacy level to answer online questions
- Parent/guardian present ≥ 18 (for children 8-17 years old)
- Children ages 8-17
Exclusion Criteria:
- Children <8 years old and ≥18
- Not proficient in English and/or not at an appropriate literacy level to answer online questions
- Severe developmental delay, impaired mobility (wheelchair users), neuropathic bladder (spina bifida, cerebral palsy, tethered cord, etc.)
- Currently passing a kidney stone, an internal ureteral stent (JJ)
- Urethral catheterization or cystoscopy in last 1 month
- History of pelvic trauma, malignancy or radiation, sexually transmitted infections, hypospadias, epispadias, meatal stenosis, posterior urethral valves, anorectal malformation
- History of spinal surgery, bladder surgery (including reimplantation), MACE surgery, Hirschsprung's disease (appendectomy ok)
- No parent/guardian present (or they are <18)
Updated on
18 Sep 2024.
Study ID: 19495; UROL-IIR-RIBQQ-VALIDATION
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