2. Continence Promotion: Prevention, Education & Organization

3. Louis Denis Ilan Gruenwald Chye Hua Ee Richard Millard Richard Roberts Carolyn Sampselle Katherine Williams Diane Newman- Chair Continence Promotion: Prevention, Education & Organization

4. Primary Prevention Primary Prevention Education Education Consumer/PublicConsumer/Public ProfessionalProfessional Organizations Organizations Delivery of Continence Care & ServicesDelivery of Continence Care & Services NationalNational Continence Promotion: Prevention, Education & Organization Promoting Awareness

5. National Organizations – 2003-4 ICI Survey Background Survey undertaken and reported @ 1 st ICI Obtained organizations from 2 sources 2 nd ICI report ICS Continence Promotion Committee (CPC) website Survey in English (American)

6. National Organizations – 2003-4 ICI Survey Survey 31 questions plus contact information 31 questions plus contact information Started distribution in 2003 Started distribution in 2003 Faxed, emailed on 6 occasions to 38 organizations in 29 countries Faxed, emailed on 6 occasions to 38 organizations in 29 countries

7. AUSTRALIAAUSTRIA (New)BELGIUM BRAZIL (New)CANADACOLOMBIA (New) CZECH REPUBLIC(New)DENMARK (New)GERMANY CHINAHUNGARY (New)INDIA INDONESIAISRAELITALY JAPANKOREAMALAYSIA NETHERLANDSNEW ZEALANDNORWAY PHILIPPINESPOLAND (New)SINGAPORE SWEDENTAIWANTHAILAND UNITED KINGDOM (4)UNITED STATES (4) National Organizations – Survey Results

8. Survey Results Survey Results Number respondents N = 24 ( 66.7 % return) Number respondents N = 24 ( 66.7 % return) Number of countries responding N = 19 Number of countries responding N = 19 Structure Structure 12 organizations established for more than 10 years 12 organizations established for more than 10 years Only 2 DO NOT have an advisory board Only 2 DO NOT have an advisory board Memberships Memberships – Professionals – Lay public ( 4 organizations > 50% representation) Employees Employees – 12 organization have between 1 and 10 employees – 4 organizations have 11 – 40 employees

9. National Organizations – Survey Results Mission Mission “ Educate consumers/lay public” “ Educate consumers/lay public” “Promote continence via public education” “Promote continence via public education” “Educate healthcare professionals” “Educate healthcare professionals” Advocate for consumer/lay public Advocate for consumer/lay public Influence policy Influence policy

10. National Organizations – Survey Results isorders they “cover” Disorders they “cover” Urinary incontinence (all) Urinary incontinence (all) Other Other – Bowel (IFFGD - USA) – Interstitial cystitis/chronic pelvic pain – Childhood enuresis (ERIC – UK)

11. National Organizations – Survey Results Do they survey membership? 4 have conducted surveys 4 have conducted surveys 2 have published results 2 have published results

12. National Organizations Survey Results Sources of Funding $$$$ Sources of Funding $$$$ Members Members Charity Charity Government Government – 3 organizations - 30%, 35% and 90% – Little interest Education grants – 11 organizations Education grants – 11 organizations Industry – Most rely on this Industry – Most rely on this

13. The National Continence Management Strategy Information booklet Outside evaluation Australia

14. National Continence Management Strategy Australia Australian Government $31 million - 1998 to 2006 Improve continence awareness, treatment and management Mission Preventative strategies and health promotion initiatives Reduce admission to aged care homes by improving the treatment and management of incontinence in older Australians Promote good practice in continence care among all health professionals.

15. National Organizations – Survey Results Publicity & Awareness - Themes “Little” understanding of problem(s) by public “Little” understanding of problem(s) by public Media coverage is “poor” Media coverage is “poor” Sponsored Sponsored National Public Awareness Campaigns National Public Awareness Campaigns Health Promotion Projects Health Promotion Projects Health Fairs Health Fairs

16. National Organizations – Survey Results Publicity & Awareness - Themes Quantification of program outcomes/impact Quantification of program outcomes/impact Articles in newspapers – 279 Articles in newspapers – 279 – Poland reported highest number – ERIC – highest number in TV – 20 Other methods used to determine impact Other methods used to determine impact Increase in calls to National Helpline Increase in calls to National Helpline Increase in “hits” to website Increase in “hits” to website 200 million impressions of Public Service Announcements 200 million impressions of Public Service Announcements

17. National Organizations – Survey Results Publicity & Awareness - Themes Experiences learned Experiences learned Important to perceive needs of target audience Important to perceive needs of target audience Public still embarrassed about issue Public still embarrassed about issue Bowel incontinence remains a significant taboo Bowel incontinence remains a significant taboo Need to increase public awareness starting in childhood years Need to increase public awareness starting in childhood years

18. National Organizations – Survey Results Survey Problems Too long Too long Language Language Incorrect information from source Incorrect information from source

19. Organizations Recommendations Repeat survey to keep information on National Organizations current (consider ICS-CPC perform year survey) Worldwide Resource Center Establish continuing government and commercial support Independently evaluate programs and material