Dana K. Nanigian

Development and Validation of the Fecal Incontinence and Constipation Quality of Life Measure in Children With Spina Bifida

PURPOSE Fecal incontinence and constipation in children with spina bifida are recognized to impact quality of life. Most disease specific quality of life instruments on fecal incontinence target adults and/or children without neuropathic bowel. We developed an instrument to evaluate bowel function and its impact on quality of life in children with spina bifida and their caregivers. MATERIALS AND METHODS A 51-item questionnaire termed the FIC QOL (Fecal Incontinence and Constipation Quality of Life) survey was developed from expert opinion, patient interviews, and modification of previously published adult and pediatric studies for nonneuropathic bowel dysfunction. The items are divided into 7 quality of life factor groupings, including bowel program, dietary management, symptoms, travel and socialization, family relationships, caregiver emotional impact and financial impact. The questionnaire was given to caregivers of children with and without spina bifida. Discriminant validity was evaluated by comparing the spina bifida and control groups. Test-retest reliability was evaluated by having 41 patients complete 2 surveys within 4 to 6 weeks. RESULTS Comparing questionnaires from 92 index patients and 52 controls showed a statistically significant difference for all 7 quality of life factor groupings. The FIC QOL instrument objectively demonstrated the negative impact of fecal incontinence and constipation on quality of life in these families. Comparing 82 questionnaires at 2 time points demonstrated the reliability of all FIC QOL questions. CONCLUSIONS The FIC QOL instrument provides a valid and reliable measure of the effect of fecal incontinence and constipation on the quality of life of caregivers and their children with spina bifida.

Vesicostomy revisited: the best treatment for the hostile bladder in myelodysplastic children?

Vesicostomy is a well‐known management of the neuropathic bladder in children, and authors from Sacramento describe their experience with this in what they very appropriately name the “hostile bladder” of myelodysplastic children.

Vesicostomy Revisited: The Best Treatment for the Hostile Bladder in Myelodysplastic Children?

calculated risk of hypertension from this review (5 in 1,000 cases) is smaller than in some published reports in the general population of children between age 4 years and adolescence. We have followed children with unilateral MCDK with ultrasounds performed at frequent intervals in the first 3 years of life (averaging every 6 months) and then annually until age 8. This evaluation schedule may result from habit rather than from a logical plan based on careful study. Narchi demonstrates that few hard data exist to validate the number of studies performed annually in children with MCDK. Pediatricians need to be aware that these children require blood pressure evaluation, from a practical standpoint probably during the well child visit. However, it is safe to say that the vast majority of these children do perfectly well without surgical removal of the multicystic dysplastic kidney.