Stephanie Gilbertson-White, PhD, RN Alexandra Bursic Paula Sherwood, PhD, RN, FAAN

1. Symptom representations and coping efforts for pain and numbness/tingling in women with a history of ovarian cancer Stephanie Gilbertson-White, PhD, RN Alexandra Bursic Paula Sherwood, PhD, RN, FAAN Heidi Donovan, PhD, RN shg42@pitt.edu School of Nursing Department Acute and Tertiary Care Funding Agencies: NIH/NINR F31 NR07556; ONS/Orthobiotech; NIH/NINR T32 NR011972

2. Background Pain and numbness/tingling are two symptoms that are frequently reported asdistressing by women with ovarian cancer. (Stavraka et al., 2012) Etiology and treatment strategies are significantly different for these two symptoms. (NCCN, 2012; APS, 2008) Cognitive representations have been found to be significantly associated with coping efforts across a variety of diseases. (Leventhal, 2011) Little is known about factors that influence patients’ symptom-related coping efforts. The relationships between individualdimensions of representations and symptom-related coping efforts have not been previously explored.

3. Theoretical Framework

4. Leventhal’s Common-Sense Model of Illness Representations (Power, Swartzman, & Robinson, 2011)

5. Leventhal’s Common-Sense Model of Illness Representations Individuals have “common-sense understandings” (i.e., representations) of health problems (e.g., cancer related symptoms) that guide how they cope with a problem. Representations consist of • Cognitions about: • Identity • Cause(s) • Timeline • Consequences • Cure or controllability • Emotional responses (Leventhal, H., Meyer, D. & Nerenz, D. 1980)

6. Purpose and Specific Aims The purpose of this study was to describe the relationships between symptom representations and coping in women with a history of ovarian cancer experiencing pain and/or numbness and tingling. Specific aims  To describe coping efforts and symptom representations for pain and numbness/tingling. To evaluate whether coping efforts are associated with symptom representations after controlling for disease and personal characteristics.

7. Methods – Design and Sample Secondary analysis of a cross-sectional, descriptive study (N=713) conducted via surveys mailed to women with ovarian cancer who were members of the National Ovarian Cancer Coalition (NOCC). This analysis includes participants (n=266) identifying pain or numbness/tingling as one of their top three “most noticed” symptoms in past week. Pain (n=152) Numbness/tingling (n=144)

8. Methods – Key Variables Independent variables: Symptom Representations Symptom Representation Questionnaire (Donovan et al, 2008): • 15-item scale per symptom • Response options of 0 (strongly disagree) to 4 (strongly agree) • Identity (severity), cause, timeline, consequences, cure/control, emotional response (distress). • Higher scores indicate more negative representations.

9. Methods – Key Variables Dependent variables: Coping Efforts Daily Coping Inventory (DCI) (Stone, Kennedy-Moore, & Neale, 1995): 9-item yes/no inventory of categories of coping strategies. Factor analysis was used on the DCI resulting in a 2-factor solution (problem-focused and emotion-focused). Sum scores for problem-focused coping (0-6) and emotion-focused coping (0-3) used in analyses.

10. Coping Subscales

11. Analysis • Descriptive statistics • Separate multiple linear regression analyses for pain and numbness/tingling to determine the relationship between symptom representations and each coping style • Co-variates: optimism, depression, total number of symptoms, survivorship status

12. Results

13. Sample (n=266) *30 participants selected both pain and n/t

14. Descriptive Statistics for C0-variates

15. Percentage of patients in each survivorship status category

16. Mean identity representation scores

17. Mean representation subscale scores

18. Mean coping sub-scale scores

19. Percentage of patients reporting use of each coping strategy Problem-focused coping Emotion-focused coping

26. Summary Representations • Scores for treatment as cause, cure/control, and timeline were higher (worse) for numbness/tingling than for pain. • Scores for consequences and emotional response were higher (worse) for pain than for numbness tingling. Coping • Managing symptom, planning, seeking emotional support, and expressing emotionswere more frequently used for pain than for numbness/tingling, • Acceptancewas the most common strategy used for numbness/tingling.

27. Conclusions In general, more coping strategies (both emotion- and problem-focused) were used for pain compared to numbness/tingling. Representations explained more of the variance in coping than disease and personal characteristics. Perceived control of the symptom was a significant predictor in three of the four models. However, the level of contribution of the other representations varied across models.

28. Limitations Sample comes from members of an advocacy organization who may differ from the general population. Secondary analysis from a 10 year-old dataset. Scoring of DCI may not capture the full scope of coping efforts or represent “adaptive” coping.

29. Implications Acceptance, or the belief that nothing can be done about the symptom, was pervasive for numbness/tingling. Assessment of symptom representations may help practitioners identify patients’ concerns about symptoms that may interfere with productive coping efforts. Interventions that include efforts to enhance patients’ sense of control over symptoms may improve patients’ coping and ultimately improve other important outcomes. Further research is needed to better understand how symptom representations, and their underlying meaning, influence the selection of different types of coping efforts.