ABSTRACT
BACKGROUND: Continence problems occur often in children with anorectal malformations (ARM). The aim of this study was to evaluate parental experiences with toilet facilities at Dutch primary schools and their experience with how schools deal with ARM children. METHODS: This survey was developed in collaboration with the national patient advocacy group (PAG). Recruitment for participation was conducted by the PAG (email listing and social media) and one expertise center for ARM. Participants were parents of school-attending ARM children aged 3 to 12 years. RESULTS: Sixty-one participants (31.9%) responded to the survey. The median age of the children was 7.0 years (IQR 5.0-9.0). Schools were often located in a village (63.9%) and encompassed 100-500 children (77.0%). In total, 14 parents (23.0%) experienced difficulties in finding a primary school. Experiences with the school were described as solely positive (37.7%), solely negative (9.8%), positive and negative (34.4%), and neither positive nor negative (16.4%). Regarding school toilet facilities, 65.6% of the toilets were reported clean and 78.7% were easily accessible. CONCLUSIONS: About 25% of parents reported difficulties in enrolling their children into primary school, and 45% reported negative experiences. This highlights the need for improved guidance and the optimization of education in schools when dealing with ARM children.
ABSTRACT
OBJECTIVES: The aim of the study was to assess the treatment efficacy of transanal irrigation and parental satisfaction in children with intractable functional constipation (FC) treated with Peristeen. METHODS: Cross-sectional survey study among parents of children (age 0-18 years) treated with Peristeen for FC (based on the Rome III criteria). Anonymous questionnaires were sent out to parents via mail, these consisted of 25 self-developed, multiple-choice questions regarding the use of Peristeen, current gastrointestinal symptoms, adverse effects of Peristeen, concomitant medication use, and parental satisfaction. RESULTS: Out of 91 invited families, 67 (74%) returned the questionnaire. In total, 84% of patients experienced fecal incontinence prior to treatment. Out of all children who still used Peristeen at the time of survey (nâ=â49), fecal incontinence had resolved completely in 41%, 12% experienced occasional episodes of fecal incontinence (<1 episode per week) and the remaining 47% still experienced episodes of fecal incontinence regularly (≥1 time per week). A total of 28 children (42%) experienced pain during rectal irrigation, especially during insertion of the catheter, inflating the balloon, or during irrigation. Overall, 86% of the parents were satisfied with the result of transanal irrigation and 67% reported that they would continue using transanal irrigation for the treatment of their child's symptoms. CONCLUSIONS: Transanal irrigation may be effective in the treatment of children with FC and renders a high parental satisfaction. Future prospective studies, preferably RCTs, are necessary to further evaluate this treatment option.