One in five women who survive breast cancer will develop lymphoedema of the upper body at some point in their life. Following breast surgery, women are recommended to follow strategies to minimise their lymphoedema risk (e.g., limiting exposure of the at-risk arm to trauma). Adherence to these strategies is typically less than optimal.

2. or "why women won't seek medical assistance"
Factors underlying adherence to
lymphoedema risk reduction strategies;
Sherman, K.A.,1,2 Kilby, C.J.,1,2 & Ridner, S.H.3
1 – Centre for Emotional Health, Department of Psychology,
Macquarie University, Sydney Australia
2 – Westmead Breast Cancer Institute, Westmead Hospital, Sydney, Australia
3 – School of Nursing, Vanderbilt University, Nashville, Tennessee

3. Importantly: Seeking medical advice at the first signs of lymphoedema
But also: Avoiding extreme temperature (sauna), and avoiding arm trauma
Engagement is less than ideal
• Breast cancer treatments increase a woman's risk of lymphoedema
• 20% of survivors will develop lymphoedema sometime after treatment
• Simple strategies are recommended to manage this risk
Lymphoedema
3
Hayes S, Karin J, Prosnitz R, Armer JM, Gabram S, Schmitz KH (2012) Upper-body morbidity after breast cancer. Cancer 118:2237-2249
American Cancer Society (2013) Lymphedema: What every woman with breast cancer should know. http://www.cancer.org/acs/groups/cid/documents/webcontent/002876-pdf.pdf.
Showalter SL, Brown JC, Cheville AL, Fisher CS, Sataloff D, Schmitz KH (2013) Lifestyle risk factors associated with arm swelling among women with breast cancer. Ann Surg Oncol 20:842-849

4. Cognitive (thoughts and beliefs) Affective (feelings and emotions)
4
Psychological Factors
Miller SM, Diefenbach MA (1998) C-SHIP: A cognitive-social health information processing approach to cancer. In: Perspectives in Behavioral Medicine. Lawrence Erlbaum, New Jersey, pp 219-244
Leventhal H, Weinman, J., Leventhal, E. A., Phillips, L. A. (2008) Health psychology: The search for pathways between behavior and health. Annu Rev Psychol 59:477–505

5. Beliefs and expectancies (beliefs) –
• Belief in ability to do recommendations (self-efficacy)
• Belief in recommendations effectiveness (response efficacy)
• Belief in ability to control lymphoedema (treatment and personal control)
• Expected lymphoedema consequences (perceived consequences)
• Expected lymphoedema timeliness (chronicity and cyclical)
Cognitive (thoughts and beliefs)
Encoding (thoughts) –
• Perceived risk of developing lymphoedema (perceived risk)
• Knowledge about lymphoedema (knowledge)
• Perceived coherency of understanding lymphoedema (illness coherence)
5
Psychological Factors
Miller SM, Diefenbach MA (1998) C-SHIP: A cognitive-social health information processing approach to cancer. In: Perspectives in Behavioral Medicine. Lawrence Erlbaum, New Jersey, pp 219-244
Leventhal H, Weinman, J., Leventhal, E. A., Phillips, L. A. (2008) Health psychology: The search for pathways between behavior and health. Annu Rev Psychol 59:477–505

6. Self-regulation (feelings and emotions) –
• Lymphoedema-related distress
Negative emotions about lymphoedema risk (emotional distress)
Ability to control negative emotions (self-regulation)
Affective (feelings and emotions)
6
Psychological Factors
Miller SM, Diefenbach MA (1998) C-SHIP: A cognitive-social health information processing approach to cancer. In: Perspectives in Behavioral Medicine. Lawrence Erlbaum, New Jersey, pp 219-244
Leventhal H, Weinman, J., Leventhal, E. A., Phillips, L. A. (2008) Health psychology: The search for pathways between behavior and health. Annu Rev Psychol 59:477–505

7. To what extent do these cognitive and affective factors influence a woman’s
willingness to engage with the following risk management recommendations
in women from both Australia and the US:
• Seeking medical advice at the first signs of lymphoedema
• Avoiding extreme temperatures (e.g., sauna)
• Avoiding trauma to the at-risk arm
Aim
7

8. Methodology
8
Participants (N = 597)
• A combined sample of women from Australia (n = 551) and the US (n = 46)
Recruited from:
Community breast cancer centers
Breast Cancer Network Australia
• Breast cancer diagnosis at least 12 months prior
• Completed active treatment
• Undergone breast and lymph node surgery

9. Measures:
Cognitive and affective factors –
• Illness perception questionnaire
• Items previously used in our research
“Lymphoedema will last for a short time”
“I get depressed when I think about lymphoedema”
“Overall, how would you rate your risk for developing
lymphoedema”
“To what extent do you believe that you can calm
yourself down when anxious or worried about
developing lymphoedema”
Methodology
9
Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D (2002) The Revised Illness Perception Questionnaire (IPQ-R). Psychol Health 17:1-16
Sherman KA, Koelmeyer L (2013) Psychosocial predictors of adherence to lymphedema risk minimization guidelines among women with breast cancer. Psycho-Oncology 22 (5):1120-1126.
doi:10.1002/pon.3111
Brady M, Cella D, Mo F, Bonomi A, Tulsky D, Lloyd S, Deasy S, Cobleigh M, Shiomoto G (1997) Reliability and validity of the functional assessment of cancer therapy-breast quality-of-life instrument. J
Clin Oncol 15 (3):974-986
Procedure – Online survey

10. Measures:
Cognitive and affective factors –
• Illness perception questionnaire
• Items previously used in our research
Engage in risk management recommendations –
• Yes/No questions
Methodology
10
“Are you consulting with the doctor immediately
if you have any slight increase of swelling in the
affected arm, hand, fingers, or your chest wall?”
“Are you avoiding extreme temperature changes
when bathing, washing dishes, etc?”
“Are you avoiding any trauma in the affected arm?”
Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D (2002) The Revised Illness Perception Questionnaire (IPQ-R). Psychol Health 17:1-16
Sherman KA, Koelmeyer L (2013) Psychosocial predictors of adherence to lymphedema risk minimization guidelines among women with breast cancer. Psycho-Oncology 22 (5):1120-1126.
doi:10.1002/pon.3111
Brady M, Cella D, Mo F, Bonomi A, Tulsky D, Lloyd S, Deasy S, Cobleigh M, Shiomoto G (1997) Reliability and validity of the functional assessment of cancer therapy-breast quality-of-life instrument. J
Clin Oncol 15 (3):974-986
Procedure – Online survey

11. Measures:
Cognitive and affective factors –
• Illness perception questionnaire
• Items previously used in our research
Engage in risk management recommendations –
• Yes/No questions
Physical wellbeing (FACT-B physical subscale)
Demographics and medical variables
Methodology
11
• Age
• Country of residence
• Level of education
• Urban/rural living
• Symptom severity
• Chemotherapy use
• Radiotherapy use
• Type of breast surgery
• Type of lymph node surgery
Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D (2002) The Revised Illness Perception Questionnaire (IPQ-R). Psychol Health 17:1-16
Sherman KA, Koelmeyer L (2013) Psychosocial predictors of adherence to lymphedema risk minimization guidelines among women with breast cancer. Psycho-Oncology 22 (5):1120-1126.
doi:10.1002/pon.3111
Brady M, Cella D, Mo F, Bonomi A, Tulsky D, Lloyd S, Deasy S, Cobleigh M, Shiomoto G (1997) Reliability and validity of the functional assessment of cancer therapy-breast quality-of-life instrument. J
Clin Oncol 15 (3):974-986
Procedure – Online survey

12. Most women were in their mid 50’s, reported low symptom severity,
and highly knowledgeable about lymphoedema
Age (Mean = 56 years, SD = 10 years)
Symptom severity (Mean = 2.43 out of 15, SD = 2.86)
Knowledge (Mean = 3.90 out of 5, SD = 0.92)
Most
12 years or less schooling
Living in urban environments
Taking anti-oestrogen
Having undergone: a mastectomy
Having undergone an axillary clearance
Having undergone chemo
Having undergone radiotherapy
women also reported:
Results
12
Descriptives
(70.1%)
(56.2%)
(74.9%)
(52.4%)
(vs lumpectomy; 55.3%)
(vs SNLB; 54.4%)
(66.2%)

13. Most women were in their mid 50’s, reported low symptom severity,
and highly knowledgeable about lymphoedema
Age (Mean = 56 years, SD = 10 years)
Symptom severity (Mean = 2.43 out of 15, SD = 2.86)
Knowledge (Mean = 3.90 out of 5, SD = 0.92)
12 years or less schooling
Living in urban environments
Taking anti-oestrogen
Having undergone: a mastectomy
Having undergone an axillary clearance
Having undergone chemo
Having undergone radiotherapy
(AUS = 57.1% US = 45.2%)
More AUS than USA women also reported:
Results
13
Descriptives
(AUS = 75.8% US = 63.6%)
(AUS = 56.1% US = 31.7%)
(AUS = 71.9% US = 46.3%)

14. Most women were in their mid 50’s, reported low symptom severity,
and highly knowledgeable about lymphoedema
Age (Mean = 56 years, SD = 10 years)
Symptom severity (Mean = 2.43 out of 15, SD = 2.86)
Knowledge (Mean = 3.90 out of 5, SD = 0.92)
12 years or less schooling
Living in urban environments
Taking anti-oestrogen
Having undergone: a mastectomy
Having undergone an axillary clearance
Having undergone chemo
Having undergone radiotherapy
More USA than AUS
Results
14
Descriptives
(AUS = 54.3% US = 68.3%)
women also reported:

15. Results
15
Engagement in risk management recommendations (%)
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Seeking medical advice Avoiding extreme heat Avoiding trauma
Australia
USA
Combined

16. 0
1
2
3
4
5
6
7
8
9
10
Emotional distress Self-regulation
Australia
USA
Combined
Results
16
Cognitive and affective factors (means)

17. 0
1
2
3
4
5
6
7
8
9
10
Australia
USA
Combined
Results
17
Cognitive and affective factors (means)

18. Variables entered into this analysis
• Perceived risk
• Knowledge
• Illness coherence
• Response efficacy
• Self-efficacy
• Chronicity
• Cyclical
• Personal control
• Treatment control
• Perceived consequences
• Self-regulation
• Emotional distress
• Urban vs rural
• Country of residence
• Lymph node surgery
• Symptom severity
• Physical wellbeing
Results
18
Seeking medical advice (logistic regression)

19. Significant cognitive and affective factors:
• Illness coherence +
• Response efficacy +
• Emotional distress +
Significant demographic and medical variables:
• Country of residence (USA)
• Type of lymph node surgery (axillary)
Results
19
Seeking medical advice (logistic regression)

20. Avoiding trauma to the at-risk arm
Results
20
Avoiding extreme temperature and trauma
Avoiding extreme temperature
Education level
Country of residence
Lymph node surgery
Radiotherapy status
Age
Urban vs Rural
Education level
Country of residence
Lymph node surgery
Radiotherapy status
Chemotherapy status
Age
Perceived risk
Knowledge
Illness coherence
Response efficacy
Self-efficacy
Chronicity
Cyclical
Personal control
Treatment control
Perceived consequences
Self-regulation
Emotional distress
Perceived risk
Knowledge
Illness coherence
Response efficacy
Self-efficacy
Chronicity
Cyclical
Personal control
Treatment control
Perceived consequences
Self-regulation
Emotional distress

21. Avoiding trauma to the at-risk arm
Results
21
Avoiding extreme temperature and trauma
Avoiding extreme temperature
Perceived risk
Knowledge
Illness coherence
Response efficacy
Self-efficacy
Chronicity
Cyclical
Personal control
Treatment control
Perceived consequences
Self-regulation
Emotional distress
Education level
Country of residence
Lymph node surgery
Radiotherapy status
Age
Perceived risk
Knowledge
Illness coherence
Response efficacy
Self-efficacy
Chronicity
Cyclical
Personal control
Treatment control
Perceived consequences
Self-regulation
Emotional distress
Urban vs Rural
Education level
Country of residence
Lymph node surgery
Radiotherapy status
Chemotherapy status
Age
+
+
+
+
+
+
+
+
+
+
- +
(axillary)
(axillary)
(lower)
(undergone)
+

22. Conclusion
22
Evidence that psychological response influences willingness to engage with the
risk management recommendations
Specifically:
Women who understand lymphoedema, perceive lymphoedema as a serious
condition, and believe that there are things they can do to minimise their risk
We need to:
Empower women to understand that they can self-manage their risk
Reinforce the ease and effectiveness of the risk management recommendations
Ensure women understand the seriousness of the condition

23. Questions?
23