Monday, November 10, 2008

Development and validation of the fecal incontinence and constipation quality of life measure in children with spina bifida

Nanigian DK, Nguyen T, Tanaka ST, Cambio A, DiGrande A, Kurzrock EA. Development and validation of the fecal incontinence and constipation quality of life measure in children with spina bifida. Journal of Urology. 2008 Oct;180(4 Suppl):1770-3; discussion 1773.

Department of Urology, University of California-Davis, Davis Children's Hospital, California, USA.

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.

PMID: 18721959

3 comments:

Annie Beth said...

Hi! I have started a new website for adults, teens, and families of children with Spina Bifida. I am going to link your blog to our "Other SB Blogs" page. The site is brand new, so it is still under construction. Come visit and give me any feedback you can. The forum is up and running, and we have been adding members all week. Please feel free to join. Thanks!

http://www.lifestyleaccelerator.com/

Diana said...

Help. I have a 6 year old daughter with spina bifida. She had an ACE procedure 3 years ago and things were working OK. As time has gone on, the time it took for an effective bowel movement has expanded to 1 1/2 hrs. We hae been using Glycerine and Saline. The docs tell us this is too long. The asked us to stop the glycerine and increae the saline and try to only leave her on the toliet for 30 minutes. The results are poor. The first couple of days she stooled for 2 hours. Today, it has been 12 hours, so far. We did a bowel motility study this week, which support slow motility on top of this. I have been playing phone tag with the doc, so I thought in the mean time I would get some input from others that may have had this same problem.

Diana

linda said...

Hi Diana,

My son uses glycerine and tap water and it takes about 1.5 hours every other night to complete his program.

Every child is different. Please consider joining SB-List for parents to take to others in the same boat:
http://www.waisman.wisc.edu/~rowley/sb-kids/sb-list.html