1. Teaching Module International Continence Society Teaching Module Self-Management of Indwelling Urinary Catheters February 2016 Mary H. Wilde, PhD, RN Professor, School of Nursing, University of Rochester, USA Member of the ICS Nurses’ Committee

2. Teaching Module Objectives Our purpose is to educate continence nurses to improve patient care and health outcomes globally. At the conclusion of this presentation, readers should be able to: 1. Examine evidence in research related to self- management in long-term urinary catheter users. 2. Describe best practices for promoting self- management in people using indwelling urinary catheters. 3. Use theoretical concepts related to catheter self- management.

3. Teaching Module Indications for long-term catheter use  Intractable urinary retention for those who cannot manage an intermittent catheter (and no caregiver to do it)  Bladder outlet obstruction, not surgically treated  Improving comfort for end-of-life care if needed  Alternatives to consider: toileting schedule (when no retention), intermittent catheter, condom/sheath catheter (for cooperative males without obstructed urine or persistent retention ) (USA CDC guidelines, Gould et al. 2009)

4. Teaching Module Long-term catheter use defined:  Long term- over 1 months use but often extends over many years.  “Indefinite use” would be more accurate term, but no agreement on terminology.  Both “catheter types” and “catheter use” for expected time of catheterization are called short and long-term, causing confusion. (Cottenden et al. 2013)

5. Teaching Module Little research in urinary catheter self-management  Self-management research is common in chronic conditions – but not with people with catheters  LT catheter users learn by trial and error, lack support groups.  Catheters are stigma; can indicate decline in health.  People with catheters often told to drink, but not how much, nor how to manage. NIH/NINR R01 NR01553 & R21 NR012763

6. Teaching Module My research developed inductively-- most in talking with patients  7 previous studies with indwelling catheters Experience of using a catheter Descriptive studies to identify catheter problems How UTI, blockage, fluids, urine flow were related What catheter users do to prevent/address problems  2 studies with intermittent catheter users, expanding theoretical framework to this population. (next power-point presentation) NIH/NINR R01 NR01553 & R21 NR012763

7. Teaching Module Prevent CAUTI Avoid leakage (bypassing of urine) Minimize catheter blockage (& frequent changes) Prevent accidental dislodgment (catheter falling out or being pulled out) Catheter management problems NIH/NINR R01 NR01553 & R21 NR012763

8. Teaching Module Quality of life disruption with indwelling catheters  Daily routines of catheter users and their families. “It’s ok when it’s working right.” (Wilde, 2002) Background to foreground with a problem: “Psshtt. You’re really soaked. It ruins the day. It ruins whatever you’re drivin’ in.” (p. 10, Wilde, 2003) Troubleshooting in evening and weekend hours, causes excess health care expenses.  Choice of SP or urethral: sexual activity can be more positive with SP, but not always (Chappel at al., 2014)  Some developed self-reliance; others not so positive (Fowler et al. 2014) NIH/NINR R01 NR01553

9. Teaching Module Key catheter problems in past two months (Wilde et al. 2013) Percent %Rate/1000 catheter days CAUTI316.22 Blockage2411.08 Dislodgement123.57 Other catheter problems Overall Percent % % Daily% Several times/ week to weekly % Several times/ month to monthly % Once in past 2 months Leaking439105129 Sediment632429397 Kinks/twists2013840 Bladder spasms3637243010 Autonomic dysreflexia 134313827

10. Teaching Module Treatments (Wilde et al. 2013) UTIBlockageUnscheduled catheter changes Percent % Weekly4 Extra home nurse visit 1930Several times a month 21 Extra office visit2523Once a month16 Emergency department 3519Once in past two months 59 Hospitalized27Changed by self10 Catheter changed6570Home care nurse46 Urine cultured65Emergency department 31 Antibiotic prescribed 100

11. Teaching Module Self-management framework Wilde, M. H., Bliss, D.Z., Booth, J., Cheater, F.M., & Tannenbaum, C. (2014). Self-management of urinary and fecal incontinence. American Journal of Nursing. 114(1): 38-45

12. Teaching Module Indwelling Urinary Catheter Self- management Randomized clinical trial NIH/NINR R01 NR01553 Research team: Wilde, M. (PI), McMahon, J.M. (Co-I), McDonald, M., Tang, W., Wang, W., Brasch, J., Fairbanks, E., Shah, S., Zhang, F., Chen, D.

13. Teaching Module Theoretical model for Self-management of Urine Flow Intervention (RCT) (Wilde, Zhang et al. 2013 ) NIH/NINR R01 NR01553

14. Teaching Module Study design- RCT (N= 202) Four contacts with Intervention nurse: 3 home visits, 1 telephone call Teaching self-monitoring for 3 days Urinary diary ( I & O and catheter journal) Educational booklet To increase awareness, self-monitoring and self- management behaviors Data collection bimonthly for a year (Wilde, McMahon, et al. 2015) NIH/NINR R01 NR01553

15. Teaching Module Sample Similar number males (51%) and females (49%) Age: 19-96, mean 61(SD 17.4) years Urethral 56%, Suprapubic 44% Use of catheter: 1-470 months, mean 6(SD 7) years Diverse by race and ethnicity white (57%), Black (30%), Asian (2%), American Indian or Alaskan Native (2%), biracial (2%), and unknown (9%). And 11% Hispanic Highly disabled: 60% need help in bathing, dressing, toileting, and getting out of bed; 19% need help in feeding NIH/NINR R01 NR01553 & R21 NR012763

16. Teaching Module January 2009 Catheter Calendar SUNDAYMONDAYTUESDAYWEDNESDAYTHURSDAYFRIDAYSATURDAY Problems: Treatments: What Was Done? B= Blockage A= Antibiotic U= Urinary Tract Infection O= Extra Office Visit D = Falls Out/Dislodged HV= Extra Nurse Visit ER= Emergency Room H= Hospitalizations R= Rehabilitation 1 3 45678910 11121314151617 18192021222324 25262728 2930 31 NIH/NINR R01 NR01553

17. Teaching Module Educational Booklet--Basic Catheter Self-Management--Fluids Stay Aware. stay aware of your body and how you feel. Drink more water than any other beverage! Limit caffeine. Drink Consistently. Optimal and consistent level all day to help prevent catheter blockage. Your Body Needs Fluids. Most people need 2000 to 3000 cc of fluid a day. For instance a 150 pound person would need 2045 cc which is equivalent to about 8½ glasses per day. More fluids are needed for hot weather or when exercising. My fluid goal is ______. Pay attention to the color of your urine. It should be light yellow all day long. NIH/NINR R01 NR01553

18. Teaching Module Basic Catheter Self-management- Prevent dislodgement Notice Changes in what you feel. Notice Catheter Position when you move and teach others. Check for kinks and twists by feeling with your hand. Ask for Help. NIH/NINR R01 NR01553

19. Teaching Module Tips from Catheter Users “ Drink the water and go!” “I didn’t know amounts of intake and output.” “I am paying attention to the color and quantity of the urine.” “Now I drink more when I am out of the house.” “I measure intake and caffeine and notice the color of urine, and sediment in the tubing. I am really being aware.” “I check the position of the catheter when getting in and out of bed.” “I think about how to best secure the catheter during activities “If something does not feel right, act on it quickly!” NIH/NINR R01 NR01553

20. Teaching Module Quick Guide to Problems and Action Strategies ProblemAction StrategiesSee Page Number Decreased/inconsistent fluid intakeIncrease fluid intake7 UTIIncrease fluid intake Recognize early symptoms of UTI and acting on it 7878 Catheter blocksIncrease fluid intake Promote catheter changes at best intervals 7 11 Adjustment to living with a catheter Approaches for living with a catheter9 Not sure of the best schedule for catheter changes Promote catheter changes at best intervals11 Kinks, twists, or tugs on catheterPrevent kinks, twists, or tugs on catheter13 Too much caffeineDecrease caffeine14 Catheter leaksDecrease catheter leakage Empty urine bag 15 16 Urine bag odorClean urine drainage bag17 Changes with sexMake adjustments for sexual activity18 Autonomic Dysreflexia (for people with spinal cord injury) Recognize early symptoms of Autonomic Dysreflexia19 NIH/NINR R01 NR01553

21. Teaching Module Increase fluid intake  “I am more conscious of what I drink. I am adamant about drinking 6 glasses of water.”  Low fluid intake might be associated with blockage and urinary tract infection (UTI). Paying AttentionThings You Can Do Notice whether you are getting enough fluids throughout the day. Drink 2000-3000 cc. fluids per day. If you like the water cold, keep several bottles in the fridge and refill them everyday. To add flavor to water, try 2 oz of cranberry or apple juice to 8-10oz of water. Keep glasses of water scattered in the house Secure a jug of water to your wheelchair. You may want to drink around meal times and before bed. Have a caregiver remind you to drink water. Notice changes in color or odor of urine. If color gets dark or urine has foul smell, increase water. If you are on fluid restriction, make sure that you stay within the restricted range. Record occasionally to check that you are staying within range. Be aware of changes in activities, such as stress and illness, I & O. Use a journal to increase awareness of how activity affects fluid intake.

22. Teaching Module Symptoms CAUTI--long term catheters Urine Changes: Color – Discolored, cloudy, dark, blood stained Odor – Foul smelling, change in smell from usual Sediment (grit) – Increased amount Temperature – Fever, chills Pain and/or pressure in bladder area or back (Burning possible, not common) Autonomic dysreflexia Early, mild symptoms of autonomic dysreflexia (e.g., goosebumps, headaches, sweats) mainly in people with spinal cord injury. (See next slide for details.) General Symptoms Blahs!, feeling sick Functioning or mental changes – weakness, spasticity, change in the level of alertness (Wilde, McDonald et al., 2013)

23. Teaching Module Autonomic dysreflexia (AD) AD is a syndrome related to a reflex of imbalanced discharges at the level of the spinal cord injury above or at Thoracic 6. It can lead to severe high blood pressure and a life threatening situation if not addressed quickly. It is most often caused by a blocked or poorly functioning catheter or an overly full bag. Constipation or pressure ulcers can also cause AD.

24. Teaching Module Results  CAUTI and dislodgement outcomes did not differ by group.  Blockage was significantly lower in the intervention group, but the result did not last the full 12 months.  Rates showed both groups improved.  The intervention group had more ED visits & hospitalizations for CAUTI and also higher self- reported CAUTI severity scores. Not powered for ED events. (Wilde, McMahon, et al. 2015) NIH/NINR R01 NR01553

25. Teaching Module Conclusion Both groups improved over time--Self- monitoring r/t calendar (unintentional intervention). Unclear whether decreases in UTI, blockage, and dislodgement rates were related to the intervention. Symptom identification, severity of UTIs, & getting care early could be r/t higher hospitalization for CAUTI in the intervention group. 25 NIH/NINR R01 NR01553

26. Teaching Module Implications Recommend additional nurse support over time to sustain intervention. Value in optimal/consistent fluid intake. Catheter calendar, a minimal intervention, could be easily implemented. Dissemination for education and research (indwelling and intermittent catheter studies).Contract with University of Rochester email Mary Wilde: mary_wilde@urmc.rochester.edu 26 NIH/INR R01 R01553

27. Teaching Module References Cottenden, A., Bliss, D., Buckley, B., Fader, M., Gartley, C., Hayer, D, Ostaszkiewicz, J., Pieters, R., & Wilde, M.H (2013). Management using continence products. In P. Abrams, L Chapple, A., Prinjha, S., & Feneley, R. (2015). Comparing transurethral and suprapubic catheterization for long-term bladder drainage: A qualitative study of the patients' perspective. Journal of Wound, Ostomy, and Continence Nursing,WOCN, 42(2), 170-175. doi:10.1097/WON.0000000000000096 [doi] Fowler, S., Godfrey, H., Fader, M., Timoney, A. G., & Long, A. (2014). Living with a long-term, indwelling urinary catheter: Catheter users' experience. Journal of Wound, Ostomy, and Continence Nursing,WOCN, 41(6), 597-603. doi:10.1097/WON.0000000000000069 [doi] Gould, C. V., Umscheid, C. A., Agarwal, R. K., Kuntz, G., Pegues, D. A., & and the Healthcare Infection Control Practices Advisory Committee (HICPAC). (2009). Guideline for prevention of catheter-associated urinary tract infections 2009. Atlanta, GA: Centers for Disease Control and Prevention.

28. Teaching Module  Wilde, M. H. (2002). Understanding urinary catheter problems from the patient’s point of view. Home Healthcare Nurse, 20(7), 449-456.  Wilde, M. H. (2003). Life with an indwelling urinary catheter: The dialectic of stigma and acceptance. Qualitative Health Research, 13(9), 1189-1204. Wilde, M. H., Bliss, D.Z., Booth, J., Cheater, F.M., & Tannenbaum, C. (2014). Self-management of urinary and fecal incontinence. American Journal of Nursing. 114(1): 38-45. Wilde, M. H., McDonald, M. V., Brasch, J., McMahon, J., Fairbanks, E., Shah, S., Tang, W., & Scheid, E., (2013) Long-term urinary catheter users self-care practices and problems. Journal of Clinical Nursing, 22, 356-67. Wilde, M. H., McMahon, J. M., McDonald, M. J., Tang, W., Wang, W., Brasch, J., Fairbanks, E., Shah, S., Zhang, F., & Chen, D. (2015) Self-management intervention for long-term indwelling urinary catheter users: Randomized clinical trial. Nursing Research, 64 (1), 24-34.DOI: 0.1097/NNR.0000000000000071. Wilde, M. H., Zhang, F., Fairbanks, E., Shah, S., McDonald, M. V., & Brasch, J., (2013). Perceived value of a urinary catheter self-management program in the home. Home Healthcare Nurse, 31 (9), 465-473. doi: 10.1097/NHH.0b013e3182a89791 NIH/NINR R01 NR01553 & R21 NR012763

29. Teaching Module Thank You! From Mary Wilde and the ICS Nurses’ Committee