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Quality of Life and Influencing Factors in Ostomates Less Than 24 Months
Post Surgery
Thom NicholsPrincipal Clinical Research Statistician
Hollister Incorporated
November 15, 2008
• 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
The Data Source
Subset of the data:
Colostomates, Ileostomates, and Urostomates
Those 24 months or less post surgery
n=663
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
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%
Age
• Median age of colostomates; 61 years• Median age of ileostomates; 53 years• Median age of urostomates; 64.5 years
The Ostomate: 24 months or less post surgery
dx
Coping,
Adapting
Accepting
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.
The Ostomate
dx
Coping,
Adapting
Accepting
…and control over the life forces that impact them is a function of this.
Survey derived Index: Satisfaction with Life
• 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
Categorizing the ostomates
Negative life satisfaction index, n=73
Neutral life satisfaction index, n=180
Positive life satisfaction index, n=322
Has had a positive affect on my life
Has had a negative affect on my life
Categorizing the ostomates
Negative life satisfaction index, n=73
Neutral life satisfaction index, n=180
Positive life satisfaction index, n=322
Has had a positive affect on my life
N=6, 8.2% N=30, 16.7%
N=157, 48.8%
Has had a negative affect on my life
N=67, 91.8%
N=150, 83.3%
N=165, 51.2%
Categorizing the permanent stomas
Negative life satisfaction index, n=73
Neutral life satisfaction index, n=180
Positive life satisfaction index, n=322
Has had a positive affect on my life
N=6, 8.2% 11.1%
N=30, 16.7% 20.0%
N=157, 48.8%50.2%
Has had a negative affect on my life
N=67, 91.8% 88.9%
N=150, 83.3%80.0%
N=165, 51.2%49.8%
Time effect?
0102030405060708090
100
0-4m 5-8m 9-12m
13-16m
17-20m
21-24m
Positiveeffect/Positiveindex
Negativeeffect/Negativeindex
Negativeeffect/Positiveindex
Categorizing the ostomates
Negative life satisfaction index, n=73
Neutral life satisfaction index, n=180
Positive life satisfaction index, n=322
Has had a positive affect on my life
N=6, 8.2%
N=30, 16.7%
N=157, 48.8%
Has had a negative affect on my life
N=67, 91.8%
N=150, 83.3%
N=165, 51.2%
Categorizing the ostomates
Negative life satisfaction index, n=73
Neutral life satisfaction index, n=180
Positive life satisfaction index, n=322
Has had a positive affect on my life
N=6, 8.2% N=30, 16.7%
N=157, 48.8%
Has had a negative affect on my life
N=67, 91.8%
N=150, 83.3%
N=165, 51.2%
Categorizing the ostomates
Negative life satisfaction index, n=73
Neutral life satisfaction index, n=180
Positive life satisfaction index, n=322
Has had a positive affect on my life
N=6, 8.2% N=30, 16.7%
N=157, 48.8%
Has had a negative affect on my life
N=67, 91.8%
N=150, 83.3%
N=165, 51.2%
Categorizing the ostomates
Negative life satisfaction index, n=73
Neutral life satisfaction index, n=180
Positive life satisfaction index, n=322
Has had a positive affect on my life
N=157, 48.8%
Has had a negative affect on my life
N=67, 91.8%
N=165, 51.2%
Group 1
Group 2 Group 3
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
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
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
Health Status
Good health prior to surgery
Good health after surgery
Group 1+/+
35.0% 82.2% Improvement
Group 2-/-
46.2% 38.5% No change
Group 3-/+
70.3% 78.8% No change
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.
What does this suggest?
Group 1 +/+
Group 2-/-
Group 3-/+
Colo 41.3% 69.7% 60.2%
Ileo 49.0% 22.7% 25.5%
Uro 7.1% 6.1% 14.3%
Other 2.6% 1.5% --
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
Body Image, n=2,686
I think my stoma has…..
Changed my appearance
Disfigured me
Had no effect on the way I look
When I stand in front of a mirror
I like the way I look
1.2% --- 4.1%
I do not like the way I look
20.9% 17.2% 6.9%
What I see, I am OK with
15.1% 3.1% 31.5%
38.1%
Body Image, Group 1 +/+
I think my stoma has…..
Changed my appearance
Disfigured me
Had no effect on the way I look
When I stand in front of a mirror
I like the way I look
5.1% --- 4.5%
I do not like the way I look
21.2% 8.3% 5.1%
What I see, I am OK with
21.2% 1.3% 33.3%
29.5%
Body Image, Group 2 -/-
I think my stoma has…..
Changed my appearance
Disfigured me
Had no effect on the way I look
When I stand in front of a mirror
I like the way I look
--- --- ---
I do not like the way I look
30.3% 60.6% 1.5%
What I see, I am OK with
3.0% 3.0% 1.5%
90.9%
Body Image, Group 3 -/+
I think my stoma has…..
Changed my appearance
Disfigured me
Had no effect on the way I look
When I stand in front of a mirror
I like the way I look
1.2% --- 4.8%
I do not like the way I look
20.5% 9.7% 4.2%
What I see, I am OK with
17.0% 1.2% 41.2%
30.2%
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.
Social IsolationHawthorne Index of Social Isolation
Index ratingGroup 1 +/+ Group 2
-/-Group 3-/+
Negative 0.6% 28.4% 0%
Neutral 4.5% 50.8% 0.6%
Positive 94.9% 20.9% 99.4%
The correlation between social isolation and life satisfaction is r=0.705.
• 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.
Social SupportMOS: Measures of QoL Soc Sup Survey
Social SupportMOS: Measures of QoL Soc Sup Survey
Index ratingGroup 1 +/+ Group 2
-/-Group 3-/+
Negative 5.8% 37.3% 3.0%
Neutral 9.0% 29.8% 6.7%
Positive 85.3% 32.8% 90.3%
The correlation between social support and life satisfaction is r=0.460.
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…
Spouse/Life Partner Affection
0102030405060708090 group 1 (prior)
group 2 (prior)
group 3 (prior)
group 1(current)
group 2(current)
group 3(current)
Does this manifest itself anywhere else?
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 Yes Impotent NAGroup 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%
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
YesGroup 1 21.3%Group 2 67.7% Group 3 33.3%
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 3appearing skin? 51.3% 25.8% 57.7%
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%
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%
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
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%
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%
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).
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
Summary
• Identifying factors: – Surgery (planned/unplanned)– Adapted?– Disabled related to stoma– Continued treatment– ET assistance
Summary
• Manifestations– A lack of social support and social isolation– Decreased spouse/life partner affection– Decreased desire for sexual intimacy– Sexual intercourse avoidance
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.
Thank you
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