Bladder and Bowel Functions, Participation and Quality of Life in Children With Intellectual Disabilities

Condition(s) studied

Study summary

Many neurodevelopmental, psychiatric, and medical disorders are commonly associated with intellectual disability. The presence of neurodevelopmental and psychiatric (NDP) comorbidities has been reported to negatively impact the clinical outcomes of bowel or bladder dysfunction.

Pediatric bladder and bowel dysfunction (BBD) is a common but underdiagnosed condition characterized by a spectrum of lower urinary tract symptoms and is often associated with constipation. Lower urinary tract symptoms include dysuria, urinary urgency, daytime incontinence, and enuresis, while bowel symptoms include constipation and encopresis. Most BBD cases are functional and not neurogenic in origin.

In children with special needs, all types of urinary incontinence are reported to occur more frequently compared to children without developmental or behavioral disabilities. Intellectual disability (IQ \<70) is also identified as a significant risk factor for urinary incontinence, with prevalence increasing as IQ decreases. In these children, lower urinary tract symptoms such as overactive bladder, dysfunctional voiding, and low fluid intake are also observed. Furthermore, according to support plans and medical records, 94% of individuals with intellectual and multiple disabilities experience constipation. Interestingly, lower levels of intellectual disability (profound and severe ID) have been associated with a lower prevalence of constipation.

Although there are studies in the literature examining bladder and bowel functions separately in specific diagnostic groups with intellectual disability, the number of studies that assess bladder and bowel functions together in children with any form of intellectual disability is limited. Moreover, to our knowledge, there is no study in the literature that evaluates bladder and bowel functions along with child participation and parental quality of life in children with intellectual disability.

Based on this gap in the literature, the aim of our study is to examine bladder and bowel functions, participation, and quality of life in children with intellectual disability

Eligibility

Primary outcome measure(s)

• Childhood Bladder and Bowel Dysfunction Questionnaire (CBBDQ — baseline
  The CBBDQ is a parent-reported instrument used to assess and quantitatively measure symptoms of bladder and bowel dysfunction in children. It is designed for children aged 5 to 12 years and consists of 18 items, including 10 items related to bladder symptoms and 8 items related to bowel symptoms. Each item is rated on a five-point Likert scale ranging from 0 (never) to 4 (almost every day or every day). Higher CBBDQ scores indicate the presence of more severe or frequent symptoms.
• Bladder and Bowel Dysfunction Scale (BBDS) — baseline
  The BBDS is a 14-item questionnaire designed to assess pediatric bladder and bowel dysfunction. Each item is rated using a five-point Likert scale. The total score ranges from 0 to 52, with higher scores indicating greater symptom severity. The scale includes 14 questions, of which the first 13 specifically address symptoms related to bladder and bowel dysfunction. The final question evaluates the level of difficulty experienced while completing the questionnaire and is not included in the total score.
• Voiding Dysfunction Symptom Score (VDSS) — baseline
  The Voiding Dysfunction Symptom Score (VDSS) was developed by Akbal et al. in 2005 and consists of 14 items. Thirteen of the items assess symptoms related to daytime urinary incontinence, nighttime urinary incontinence (enuresis), urinary frequency during the day, the presence of constipation, and various lower urinary tract symptoms. The 14th item evaluates the impact of these symptoms on quality of life. The total score ranges from 0 to 35 points, with higher scores indicating increased severity of voiding dysfunction symptoms. The overall score is considered to be 35+3, with the additional 3 points referring to the quality-of-life impact assessment.
• Child and Adolescent Scale of Participation (CASP) — baseline
  The Child and Adolescent Scale of Participation (CASP) is a caregiver-reported measure used to assess the extent to which school-aged children (aged 5 years and older) participate in home, school, and community activities compared to their same-age peers. The scale consists of 20 items grouped into four subdomains: Home Participation (6 items), Community Participation (4 items), School Participation (5 items), and Home and Community Living Activities (5 items). Each of the 20 items is rated on a four-point scale: "Age Expected (Full participation)," "Somewhat Limited," "Very Limited," and "Unable to Participate." If the item reflects an activity that is not age-appropriate for the child (e.g., employment), the response "Not Applicable" is selected. Higher scores indicate greater levels of participation. In addition, the CASP includes five open-ended questions that explore effective strategies and supports, as well as barriers that may influence the child's participation.

Trial sites (1)

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