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relationship status and distress after cancer
1. IPOS, October 20. 2011
Relationship status affects response on the
Distress Thermometer, problem list and referral
wish
Marrit Tuinman
Mariët Hagedoorn
Stacey Gazendam-Donofrio
Josette Hoekstra-Weebers
Comprehensive Cancer Centre, the Netherlands
Dutch Cancer Society
University Medical Centre Groningen, the Netherlands
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2. Research interests
• Finding a new partner after treatment for cancer
- AYAs often single
- middle-aged may be divorced or widowed
• Obstacles single survivors face when looking for a partner
- How do singles function after cancer?
2
3. Cancer and well-being
• Cancer related distress
- The overall burden of diagnosis and treatment
• 30%?
• Risk factors for elevated distress
- Being female
- Being younger
- Being unmarried
4. Marital status and well-being after cancer
• Being unmarried related to:
- Serious psychological distress, also in the long term
- Highest rates of clinically elevated distress (up to 61%)
- Highest rates of clinical depression (up to 16%)
- But: functioning is less well in the general population also…
5. Marital status and well-being after cancer
(2)
• Relationship between being unmarried and distress is
- lowest for healthy people
- then: for people with a serious illness
- strongest for people who had cancer
• Being unmarried and having a cancer history raises unique isues
• What type of problems elevates distress in unmarried cancer
patients?
7. Dutch version
• Distress thermometer & problem list
• 5 problem domains
- practical, social, emotional, spiritual, and physical
• 47 items (additional 12 items after focus group meetings)
- for every problem ticked as „yes‟: rate burden from 1-10
• Added question
- „would you like to talk to a professional about your
problems?‟
8. Validated in the Netherlands in 2008
• cut-off > 5
• More a ruling-out tool: 95% of low scoring patients are indeed not
distressed (negative predictive value)
• 57% of patients with elevated distress do not desire a referral
Tuinman, Gazendam-Donofrio, Hoekstra-Weebers, Cancer (2008)
9. Modern relationship forms
• Very often studies include a dichotomous variable: married vs not
married
• Divorced, cohabiting, living-apart-together (LAT), never-married
the Netherlands:
- 33% of people living alone in the Netherlands do have a
steady partner
- 30% divorce rate overall, at mean age of 44
10. Research questions
• does cancer related distress differ according to relationship
status?
• does the desire for additional care differ according to
relationship status?
• does the desire for additional care in high distressed patients
differ according to relationship status?
• what type of problems are related to relationship status?
11. Method
• questionnaires
• 22 hospitals mainly in the north-eastern region of the Netherlands
• cross-sectional: during treatment or follow-up
• inclusion criteria:
- >18 years
- aware of diagnosis and treatment plan
- sufficient command of the Dutch language
- physically fit to fill in the questionnaire
12. Response
• 22 Hospitals received 2600 packages
• Number handed out: ?
• 1327 Questionnaires were sent back to the CCCN
• 51% (estimated) response rate
• Response rate varied between 32%-72%
13. Respondents: disease characteristics
Total group n = 1315
%
Married 75
Cohabiting 6
LAT 2
Divorced 3
Widowed 7
Single 6
Type of cancer
Breast 43
Digestive 11
Urologic 15
Lung 7
Gynaecologic 7
Other 17
Missing n=12
Treatment received
Surgery only 24
Radiotherapy only 6
Chemotherapy only 8
Combination therapy 62
Missing n=78
In follow-up 74
time since diagnosis in years m (sd) 2.1 (3.1)
Range .02-33.7
14. Respondents: sociodemographics
Total group n=1315
Age (yrs)*** 60.9 (11.6) F= 21.1, p <.001 widowed, married, divorced,
Range 21-89 LAT, single, cohabiting
Missing 14
Gender Chi2=24.3, p<.001
Male### 491 (37%) divorced, widowed, cohabiting,
Female 823 (63%) single, married, LAT
Missing 1
15. Does cancer related distress differ between groups?
mean thermometer score
6
5
4,5 4,6
4
4
3,8
3,6
3,3
3
2
Married Cohabiting LAT Divorced Widowed Single
F=2.5, p=.02
Bonferroni: widowed vs singles 95% CI 0.03 – 2.52, p=.03
16. Does clinical distress differ between groups?
% above cut-off
58% 58%
60%
50% 42% 44%
39% 40%
40%
30%
20%
10%
0%
Married Cohabiting LAT Divorced Widowed Single
Chi2=12.9, p=.02
17. Does the desire for additional care differ between
groups?
Yes/ Maybe
60%
51%
48%
50%
40%
38%
40% 32%
25%
30%
20%
10%
0%
Married Cohabiting LAT Divorced Widowed Single
Chi2=21.1, p=.001
18. Accordance high distress & referral wish
>5 ánd wanting a referral
80% 71% 70%
70% 61%
53%
60%
45%
50% 41%
40%
30%
20%
10%
0%
Married Cohabiting LAT Divorced Widowed Single
Chi2=35.3, p=.001
19. What type of problems are related to relationship
status?
“Yes, this bothered me in the past week”
Groups differed on these items (20/47):
Practical problems Social problems Emotional problems Physical problems
Housing Dealing with partner Self esteem Appearance
Housekeeping Dealing with friends & Family Anxiety Sexuality
Transportation Loneliness Eating
Work/ education Concentration Daily activities
Finances Guilt Fatigue
Insurance Loss of control Strength
20. Problems addressed most often
• Married, cohabiting and widowed patients never addressed specific
problems most often
• Problems most often adressed per group:
Singles LAT Divorced
Housekeeping 45% Work/education 40% Housing 20%
Transportation 21% Finances 28% Insurance 12%
Dealing with friends & family 24% Dealing with partner 20% Anxiety 49%
Self-esteem 40% Loss of control 26%
Loneliness 28% Sexuality 36%
Concentration 46% Fatigue 80%
Guilt 17% Strength 60%
Appearance 33%
Eating 30%
Daily activities 40%
21. Differences in problem burden
• Only burden in the practical domain differs between groups*
- LAT, single, cohabiting, divorced, married, widowed
• Only 2 items differ in burden between groups: transportation** &
sexuality***
ANCOVAs Controlled for age and gender
* F=2.5, P=.03
** F=2.9, p=.02
*** F=2.2, p=.04
22. In sum
• It‟s not just having a partner or not
• Singles & LATs
- experience most distress
- most often report clinical distress
- most often desire additional care
• Cohabiting patients‟ reactions more similar to divorced patients
than to married ones
• Widowed patients, followed by married patients experience least
distress and wish for help
23. Discussion
• Accordance between clinical distress and referral wish is higher
for singles & LATs
- “I don‟t want to handle this by myself”
• singles, LATs and divorced patients report the most problems, but
the burden is not higher than in other groups (except for practical
problems)
- life after cancer is most problematic for these three groups
24. Discussion (2)
• Elevated distress in singles & LATs reflects a desire for additonal
care
• Help is most wanted for
- practical problems (housekeeping & work)
- emotional problems (concentration, loneliness & self esteem)
- physical fitness problems (fatigue, strength, daily activities)
- sexuality
25. Additional help
• Referral to social worker, psychologist or physical
rehabilitation program would be the choice
• May improve well-being
- benificial when looking for a partner