Abstract P2-13-04: Unmet Needs among Women with Breast Cancer Who Develop Lymphedema: A Population-Based Study

Abstract

Abstract Background: In a study of Australian breast cancer patients diagnosed 3 months to 6 years previously, almost 25% reported coping with lymphedema to be a moderate to high level need. However, that study did not explore what needs were specific to management of lymphedema. Our aim was to explore the unmet perceived needs among women treated with breast cancer for whom symptoms and signs indicate the presence of lymphedema. Methods: Following a multi-stage process, 237 of an initial 1930 eligible women treated for breast cancer 3 to 5 years previously were identified as having symptoms and signs indicative of lymphedema. At the first screening stage, women completed a symptom questionnaire. Those in whom upper limb symptoms occurred on the affected side were asked to have their arm circumference measured at standardised points. A purpose-designed questionnaire to assess lymphedema-related unmet needs was sent to women in whom their arm circumference, on the side of surgery, was at least 2cm or greater than the circumference on the other arm at any of the 5 standardized points. The 60-item Lymphoedema Needs Questionnaire-Breast Cancer quantifies unmet needs from the previous month, across psychological, health system and information, physical and daily living, patient care and support, sexuality needs, body image and financial domains. The frequency with which women rated a moderate to high need for each question was tabulated. The domains for current unmet needs were confirmed using factor analysis. The scores for each domain were averaged as well as dichotomized to identify where there were current needs. Results: The ten items most commonly identified as a ‘moderate to high current need’ included having their doctor and allied health workers fully informed about lymphedema, acknowledge the seriousness of lymphedema, and be willing to treat it. Women wanted access to up-to-date mainstream and alternative treatments and financial assistance for their garments. The 3 factors which explained most of the variance were i) Information and support (11 items; accounting for 49% of the variance); body image and self esteem (7 items; 7% variance); and health system (7 items; 5% variance). Examination of these 3 factors revealed that while the needs were generally low, they were common (Table 1). Current Domain Needs Conclusion: A high proportion of women expressed some current need 3 to 5 years after the initial breast cancer diagnosis for their doctor to have knowledge about lymphedema, treat it as a serious condition, and be willing to follow up treatment. This may reflect the minimal outwards signs which are presented. However, it is currently believed but not yet proven that intervention at the earliest opportunity is the most efficacious. To address the needs of women living with lymphedema and perhaps prevent progression of lymphedema, it is important that mild symptoms are not dismissed and that women are referred to the appropriate specialist. Acknowledgement: National Breast Cancer Foundation Citation Information: Cancer Res 2010;70(24 Suppl):Abstract nr P2-13-04.