Bowel and Bladder Continence: Who Measures What ...and Why?

1. Bowel and Bladder Continence:Who Measures What ...and Why? William O. Walker, Jr. MD Professor, Pediatrics Seattle Children’s Hospital University of Washington School of Medicine

2. The Effectiveness of Bowel and Bladder Techniques in Children with Spina Bifida BSF Approach APE Approach Funded by:

3. What do we know?What do we think we know? • What is continence? • Are current programs effective? • Medically • Quality of Life • Who decides? • Physician • Parent • Patient • Everyone else

4. Continence • Definition • Medical / Physiologic • Social • “Tolerable”

5. Bowel Continence Table

6. Bladder Continence Table

7. Are current methods and programs effective? • Efficacy • The knowledge that an intervention provided has proven benefit by a random controlled trial • “the gold standard” • Effectiveness • Evidence that the benefits of such efficacious interventions continue to be found in large populations by multiple service providers.

8. Medical vs. Surgical • Too Much • Too Little • Too Late

9. Who Decides? Physician Parent Patient Everyone else

10. Improving Quality of Life Stacey Mizokawa, PhD Licensed Psychologist Children’s Hospital Los Angeles University Center for Excellence in Developmental Disabilities University of Southern California

11. Qualitative Analysis • Conducted interviews or focus groups • Transcribed interviews • Read transcripts to identify recurring themes and issues

12. Families (8) 5-7 year olds (5) 8-10 year olds (4) 11-12 year olds (4) parents/caregivers Practitioners 22 Urologists, pediatricians, nurses, occupational and physical therapists, nutritionists, social workers, psychologists, and clinic administrator Analysis to Date

13. Themes for 5-7 year olds • Limited discussion of impact of toileting on daily life • Some parents report their children are embarrassed • “I know that he gets embarrassed…he acts like he’s not dirty, that he doesn’t care about it…” (mother of 5 year old boy) • Others report a lack of self-consciousness • “…so we’ll be in the middle of the restaurant and she’ll go ‘Excuse me, I’m poopy. I can smell myself.” (mother of 5 year old girl)

14. Themes for 5-7 year olds • Impacts activities and who takes the child • Developmentally appropriate resistance to toileting • Won’t stop playing • Won’t eat vegetables • Part of the daily routine

15. Themes for 8-10 year olds • Aware of toileting differences • Increased concern about others knowing • Age appropriate modesty • “because he don’t let everybody change [him]…he’s not shy but only those people gonna change him.” (mother of 9 year old boy)

16. Themes for 8-10 year olds • Identifying strategies • “I would just say…I just need to get some medicine [from the nurse]” (10 year old boy) • “I would have my clothes over [my supplies] and have the toys on the very top so that I could just pull them out” (10 year old boy) • Wear long shirts • Wear underwear over diapers

17. Themes for 8-10 year olds • Increased concern about independence • Loses play/free time • “It takes time to do everything, his regimen, and everything, right? He would probably like to be outside playing more but he knows he needs to leave or do what he needs to do. Sometimes he loses recess time, right, changing himself and then he only has a little time left.” (mother of 9 year old boy)

18. Themes for 8-10 year olds • Absences due to incontinence • Part of the daily routine

19. Themes for 11-12 year olds • Spoke about their programs in detail • Articulate about impact of toileting on lives • “Like I was getting something and I think he saw half of it and he was like, ‘you wear diapers, huh?’ and I was like ‘no.’ But he was saying it out loud and I was just not listening to him and I don’t know what to do about it.” (12 year old girl)

20. Themes for 11-12 year olds • Limited social activities • Can’t spend the night at a friend’s house “because then the parents would have to know and then the person…would be wondering why I’m taking so long in the bathroom.” (11 year old boy) • Self-consciousness • “When I go in there [nurse’s bathroom] they are staring at me and I feel embarrassed.” (12 year old girl)

21. Themes for 11-12 year olds • Reluctance about independence • “She doesn’t want to help. I just tell her I need her to.”(11 year old boy) • Part of the daily routine

22. Themes for Practitioners • Definition of success • Social continence or “being able to go to school, being able to do some things outside the home, and feeling like they’re confident enough to do those things without fear of having an accident” (nurse) • “In terms of the whole urinary tract, number one we want to make sure we preserve the kidneys. That’s always going to be number one—preserve the kidneys.” (urologist)

23. Themes for Practitioners • Identified barriers to independence • A lot of overlap with parent and child reports • Tension between professionals and parents when the programs are not successful • “I don’t want to blame the parents…if we the doctors and nurses, our team, has not adequately prepared them and it is being sprung upon them with the kid going to school and with a year or two process, it’s going to take a while.”(pediatrician)

24. Discussion • What are your definitions of success? Has it changed along the way? • What were the important steps that facilitated independence? • How have you and your child problem solved some of the social issues that have come up? • How do the continence programs impact your quality of life? • What has been successful in increasing or maintaining your quality of life?

25. The West Coast Spina Bifida Research Consortium • Washington-Seattle • Seattle Children’s Hospital • University of Washington School of Medicine • Brian Dudgeon, PhD, OTR • Associate Professor, Rehabilitation Medicine Division of • Occupational Therapy • Lynne C Kramer, MD MAJ, MC, USA • Developmental Pediatrics, Landstuhl Regional Medical Center • William O. Walker, Jr., MD • Professor, Pediatrics Chief, Division of Developmental Medicine • Department of Pediatrics • Oregon-Portland • Child Development and Rehabilitation Center • Oregon Health & Science University • Elizabeth Adams, PhD, RD • Assistant Professor, Department of Public • Health and Preventive Medicine • Kurt A. Freeman, PhD • Associate Professor of Pediatrics and Psychiatry • Mark J. Merkens, MD • Associate Professor Division of Developmental Pediatrics • Director, Spina Bifida Program • California- Los Angeles • Childrens Hospital Los Angeles • University of Southern California • Robert A. Jacobs, M.D., MPH • Head, Division of General Pediatrics • Director, USC UCEDD • Professor of Pediatrics, Keck School of Medicine • Kristy Macias • Project Assistant, USC UCEDD • Stacey Mizokawa, PhD • Licensed Psychologist, USC UCEDD • Ann Neville- Jan, PhD, OTR/L, FAOTA • Associate Chair – Faculty and Curriculum • Associate Professor, Division of Occupational Science and Occupational Therapy • Kathryn Smith, RN, MN • Associate Director for Administration, USC UCEDD • Assistant Professor of Clinical Pediatrics Keck School of Medicine