Abstract

Abstract Introduction: Lymphedema arising from breast cancer surgery and treatment is characterized by arm impairment, physical disfigurement, emotional distress and diminished quality of life. Given no specific lymphedema cure, early detection and risk management strategies are recommended. The American Cancer Society (ACS) identifies simple behavioral strategies to minimize lymphedema risk; however, little is known about women's adherence to these recommendations over time. Even less is known about how women perceive lymphedema risk and the psychological factors that promote long-term adherence. Guided by the Cognitive-Social Health Information Processing model we assessed adherence to risk management strategies and identified psychological factors associated with adherence. Methods: Women (N = 103) diagnosed with primary breast cancer and scheduled for breast surgery initially completed the baseline questionnaire prior to surgery, and then received the ACS publication “Lymphedema: What Every Woman With Breast Cancer Should Know” as part of usual care. Follow-up questionnaires were completed by participants 6- and 12-months later. Baseline data collected included demographic and medical history variables, lymphedema-related knowledge and cognitive and affective factors (perceived risk, beliefs and expectancies, self-regulatory competencies, negative affect), and adherence to risk management strategies. Adherence was also assessed at 6- and 12-months. A mixed-model maximum-likelihood logistic regression was employed in data analyses. Results: Adherence to risk minimization strategies increased over time (p < .001) and varied with the specific strategy (p < .001). Risk minimization strategies fell into three broad groupings: 1) High levels of consistent adherence across time - wearing loose clothing, avoiding tight jewelry, avoiding blood pressure readings and avoiding trauma to the arm; 2) Moderate levels of adherence and greater variability across time - avoiding cutting cuticles, extreme sun exposure, carrying heavy bags, and temperature extremes, and consulting with a doctor when symptoms appear; 3) Low level of adherence - wearing protective gloves and using an electric razor. Baseline knowledge was associated with adherence to all strategies. In addition, increased self-efficacy to enact the strategies (OR = 1.82, p = 0.0001), greater beliefs in one's self-regulatory ability to manage distress (OR = 1.25, p = 0.0017), and decreased risk-related negative affect (OR = 0.96, p = 0.03) were associated with increased adherence to the recommendations. Conclusions: During the 12 months following breast cancer diagnosis, women demonstrated increased awareness of lymphedema risk management and adherence to the recommended strategies, although adherence to individual strategies varied. Psychological factors were associated with adherence to recommendations. Specifically, women with greater knowledge, self-efficacy to enact recommended strategies and ability to self-regulate negative emotions, and lower negative affect were more likely to be adherent. These findings suggest that for lymphedema education approaches to be maximally effective, they should incorporate psychological interventions designed to enhance self-efficacy and coping in women at risk to ensure long-term adherence. Citation Information: Cancer Res 2012;72(24 Suppl):Abstract nr P6-09-05.

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