Relationship status influences type of problems, distress and wish for professional care 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?

6. Detecting problems & distress: screening

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

26. Thank you
Any questions or comments?

27. Referral wish differs (p<.001)
% yes / maybe
60
50
13
40
28
18
30
12 24
10 38
20
20 22 20
10 14 15
0
Married Cohabiting LAT Divorced Widowed Single
maybe yes