The Data Source

1. Quality of Life and Influencing Factors in Ostomates Less Than 24 Months Post SurgeryThom NicholsPrincipal Clinical Research StatisticianHollister IncorporatedNovember 15, 2008

2. The Data Source • Hollister Ostomy Comprehensive Health and Life Assessment • N=2,988 adult colostomates, ileostomates, and urostomates • Geographically dispersed throughout North America and the UK • Late 2004, and continues • Valid and reliable instrument containing 115 questions assessing pre and post surgical health and life status • Crohnbach’s alpha, not less than 0.82 Subset of the data: Colostomates, Ileostomates, and Urostomates Those 24 months or less post surgery n=663

3. The Ostomy Comprehensive Health and Life Assessment • A self reported assessment of health status, marital status, occupational status, sexual and social well being, emotional status, family life, and overall contentment with life. • Incorporates 3 validated instruments • SF 36 • MOS Measures of Quality of Life Social Support Survey • Hawthorne’s Index of Social Isolation

4. Distribution • UK: n=324 48.9% NA: n=339 51.1% • Colostomates; n=361 54.7% • Ileostomates; n=217 32.9% • Urostomates; n=68 10.3% • Approximately 20 percent have temporary stomas • 305 males; 46.1% • 356 females; 53.9%

5. Age • Median age of colostomates; 61 years • Median age of ileostomates; 53 years • Median age of urostomates; 64.5 years

6. The Ostomate: 24 months or less post surgery Coping, Adapting Accepting dx Premise: Who the ostomate is, is a function of the life forces that impact them. Who they are is a matter of how well they can control life forces.

7. The Ostomate Coping, Adapting Accepting dx …and control over the life forces that impact them is a function of this.

8. How much do you think having a stoma affects your life: 5 pt Likert Scale. Social Life Family Life Leisure Time Financial status Overall contentment Survey derived Index: Satisfaction with Life

9. Categorizing the ostomates

10. Categorizing the ostomates

11. Categorizing the permanent stomas

12. Time effect?

13. Categorizing the ostomates

14. Categorizing the ostomates

15. Categorizing the ostomates

16. Categorizing the ostomates Group 1 Group 2 Group 3

17. Questions • Why are some people in one group, and some in others? • Are there factors other than the permanence of the stoma that influence this? • Can these factors be identified? • Family life • Social support • Body image • Occupational stability • Personal relationships • Continued health problems • Peristomal skin issues

18. What do we know? • Normalizing tasks undertaken by the patient, in the presence of life altering surgery, is intimately associated with the capacity to balance post-surgical expectations with the reality of the situation. • Nichols& Riemer JWOCN, V35, 2008

19. Items for discussion • Health Status • Body Image • Social support / Social isolation • Spouse/Partner relationships • Affection/Intimacy/Intercourse • Peristomal skin conditions • Occupational stability • Overall demographics • Your role

20. Health Status

21. Diagnosis of Cancer • Group 1 +/+: 29.9% have originating DX of cancer. • Group 2 -/-: 46.3% have originating DX of cancer. • Group 3 -/+: 69.1% have originating DX of cancer.

22. What does this suggest?

23. Body Image • Question: When I stand in front of a mirror • I like the way I look • I do not like the way I look • What I see I am OK with • I think my stoma has • Changed my appearance • Disfigured me • No effect on the way I look

24. Body Image, n=2,686 38.1%

25. Body Image, Group 1 +/+ 29.5%

26. Body Image, Group 2 -/- 90.9%

27. Body Image, Group 3 -/+ 30.2%

28. Social IsolationHawthorne Index of Social Isolation • During the past four weeks • I felt alone and friendless • I had someone to share my feelings with • It has been easy for me to relate to others • I felt isolated from other people • I found it easy to get in touch with others when I needed to • When with other people I felt separate from them The correlation between social isolation and life satisfaction is r=0.705.

29. Social IsolationHawthorne Index of Social Isolation The correlation between social isolation and life satisfaction is r=0.705.

30. Social SupportMOS: Measures of QoL Soc Sup Survey • There is some to listen to me when I need to talk • There is someone to confide in or talk about my problems • There is someone to share my most private worries and fears with • There is someone who understands my problems.

31. Social SupportMOS: Measures of QoL Soc Sup Survey The correlation between social support and life satisfaction is r=0.460.

32. Is Group 2 a group that is not socially connected (for whatever reason)? • Spouse /life partner affection • Within the year prior to your surgery, were you and your spouse/partner…. • Are you and your spouse/life partner now…

33. Spouse/Life Partner Affection Does this manifest itself anywhere else?

34. Spouse/Life Partner Affection Normal/strong desire for sexual intimacy pre-surgery currently change Group 1 58.6% 51.3% 12.5% Group 2 57.8% 30.3% 47.6% Group 3 66.4% 50.6% 23.7% Do you and your spouse/partner avoid intercourse Occasionally my stoma No causes problems YesImpotentNA Group 1 39.7% 11.9% 14.6% 8.0% 25.8% Group 2 12.5% 6.2% 37.5% 12.5% 31.2% Group 3 29.8% 6.2% 19.2% 18.0% 26.7%

35. Spouse/Life Partner Affection Normal/strong desire for sexual intimacy pre-surgery currently change Group 1 58.6% 51.3% 12.5% Group 2 57.8% 30.3% 47.6% Group 3 66.4% 50.6% 23.7% Do you and your spouse/partner avoid intercourse Yes Group 1 21.3% Group 2 67.7% Group 3 33.3%

36. Skin Irritation The very last time you changed your pouch/barrier and looked at the skin around your stoma would you say it was ….. yes yes yes normal healthy Group 1 Group 2 Group 3 appearing skin? 51.3% 25.8% 57.7%

37. Change work habits Because of your ostomy surgery did you need to change how you go about working (work habits)? yes no does not apply Group 1 26.3% 41.0% 32.7% Group 2 62.1% 6.1% 31.8% Group 3 25.6% 40.8% 33.5%

38. Change work habits Because of your ostomy surgery did you need to change occupations? yes no does not apply Group 1 3.2% 52.6% 44.2% Group 2 22.7% 33.3% 43.9% Group 3 3.0% 56.1% 40.8% Removing “does not apply” and looking at those that answered yes to both questions we find: Group 1 = 2.4% Group 2 = 41.7% Group 3 = 5.4%

39. Who are these people? • Group 1: • 42% are male, 58 % are female • Median age of 55 years • Group 2: • 49% are male, 51 % are female • Median age of 56 years • Group 3: • 56% are male, 44 % are female • Median age of 63 years

40. Who are these people? • Planned/expected surgery? • Group 1: Yes 66.0% • Group 2: Yes 45.4% • Group 3: Yes 59.4% • Adapted to living with a stoma? • Group 1: No 0% • Group 2: No 23.9% • Group 3: No 1.2% • Disabled (stoma related)? • Group 1: Yes 7.7% • Group 2: Yes 48.5% • Group 3: Yes 8.5%

41. Who are these people? • Continue to undergo treatment of the disease or injury that caused the stoma surgery? • Group 1: Yes 33.8% • Group 2: Yes 43.3% • Group 3: Yes 31.7%

42. Who are these people? • Those is Group 1 and Group 3 are twice as likely to have had the assistance of a ET pre and post surgery than those in Group 2 (odds ratios: 2.0 and 2.1 respectively).

43. Summary • Identifying factors: • Type of stoma • Originating DX of cancer • No change in health status • Poor body image • Peristomal skin trauma • Lack of occupational stability

44. Summary • Identifying factors: • Surgery (planned/unplanned) • Adapted? • Disabled related to stoma • Continued treatment • ET assistance

45. Summary • Manifestations • A lack of social support and social isolation • Decreased spouse/life partner affection • Decreased desire for sexual intimacy • Sexual intercourse avoidance

46. Conclusions • That factors exist that influence the post surgical return to a “quality of life” • The factors are recognizable (identifiable). • The factors can be part of a prophylactic regimen of treatment • The identification of the factors may be incorporated into post surgical health intervention regimens.

47. Thank you