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Does incontinence in a child with bladder exstrophy negatively affect caregivers? A mental health inventory survey
Kimberly Dawes1, Suhaib Abdulfattah1, Jay Shah1
1Division of Urology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Insights
Caregiver mental health was largely unaffected by urinary incontinence in children with bladder exstrophy epispadias complex (BEEC). While depression showed a slight increase with greater incontinence, overall outcomes remained within normal ranges.
Area of Science:
- Pediatric Urology
- Mental Health Research
- Caregiver Well-being
Background:
- Urinary continence is a key surgical goal for bladder exstrophy epispadias complex (BEEC), often achieved late in childhood.
- The impact of persistent incontinence on caregiver mental health and its influence on surgical timing is poorly understood.
Purpose of the Study:
- To investigate the association between urinary incontinence severity in children with BEEC and caregiver mental health outcomes.
- To determine if incontinence impacts caregiver anxiety, depression, emotional well-being, and social functioning.
Main Methods:
- 110 caregivers of children with BEEC completed validated mental health surveys (SF-36, Beck Anxiety, Beck Depression).
- Urinary continence status (dry intervals) was assessed via caregiver interviews or medical records.
- Statistical analyses included Kruskal-Wallis and linear regression to identify associations.
Main Results:
- A significant majority (76.3%) of children experienced total incontinence or less than one hour of dryness daily.
- Caregiver anxiety, emotional well-being, and social functioning were not significantly linked to incontinence levels.
- A trend indicated increased caregiver depression scores with greater urinary incontinence, though all scores remained within normal limits.
Conclusions:
- Urinary continence status in children with BEEC does not appear to be an independent predictor of most caregiver mental health outcomes.
- A potential link between increased incontinence and higher depression warrants further longitudinal investigation.
- Improved social functioning and emotional well-being in caregivers may correlate with reduced anxiety and depression, respectively.
Introduction:
Urinary continence is a goal of bladder exstrophy epispadias complex (BEEC) surgical management. However, it is often not achieved until school age or later. Little is known about the mental health implications of this incontinence on caregivers and whether this should affect timing of surgical interventions to achieve continence. We hypothesized that caregivers of children with continuous incontinence or dry intervals <1 h per day/night exhibit adverse mental health outcomes.
Objective:
To evaluate the relationship between urinary incontinence of children with BEEC and caregiver mental health outcomes.
Materials And Methods:
In this IRB-approved study, randomly selected caregivers of a cohort of children with BEEC were administered the RAND 36-Item Short Form Survey (SF-36), Beck Anxiety Inventory, and Beck Depression Inventory. Dry intervals were determined by interviewing caregivers or outpatient records. BEEC patient sex, age, time from initial repair, and diagnosis along BEEC were recorded. Kruskal-Wallis rank test and linear regression analyses were performed to assess associations between dry intervals and mental health scores. P-values were 2-sided and a p < 0.05 was considered statistically significant.
Results:
110 BEEC caregivers were surveyed of a total of 110 children with BEEC, 84 (76.3 %) reported their children had total incontinence or dry interval <1 h per day/night. Caregiver mental health outcomes -anxiety, emotional well-being, and social functioning - were not significantly associated with dry interval stratification. Depression scores did increase with decreasing dry interval. However, all scores remained within normal parameters. Notably, social functioning scores were associated with decreased anxiety (p < 0.001) and higher emotional well-being scores were associated with decreased depression (p < 0.001).
Conclusion:
Continence status was not independently associated with most caregiver mental health outcomes. A trend towards increased depression scores with greater incontinence suggests the need for longitudinal follow-up.
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