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

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.

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.

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.

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.

The PedsQL GI Module is designed for different age groups (2-4 years, 5-7 years, 8-12 years, and 13-18 years). It includes 74 items for both child self-report and parent proxy-report versions. The module consists of 10 separate Likert-type subscales that assess various gastrointestinal symptoms. Higher scores on the PedsQL GI Module indicate better health-related quality of life, while lower scores reflect a greater negative impact of gastrointestinal symptoms on quality of life.

The Nottingham Health Profile (NHP) is used to assess health-related quality of life. It is a general quality of life questionnaire that measures an individual's perceived health problems and the extent to which these problems affect normal daily activities. The questionnaire consists of 38 items and evaluates six dimensions of health status. The items are answered with a "yes" or "no" response. Each section is scored on a scale from 0 to 100, where a score of 0 indicates the best possible health status and a score of 100 indicates the worst. Within the scope of this study, both the subscale scores and the total NHP score will be evaluated. The total NHP score will be calculated as the sum of the subscale scores.