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Background: Lymphedema of the breast/chest wall after breast cancer treatment is often associated with pain and reduced quality of life. We conducted a pilot study to evaluate whether the use of a compression vest reduced symptoms of breast/chest wall edema in breast cancer patients. Methods and Results: This single-center study included patients ( n  = 25) with symptomatic breast/chest wall edema with a pain score of ≥3 on the Numerical Rating Scales (range 1-10). The patients were instructed to wear a compression vest (Lymphatrex, Class II) for 6 months. Wilcoxon signed-rank tests were used to compare differences in patient-reported pain intensity/severity. Analyses included all patients with available data. In total, 17 (68%) continued to wear their vests for 6 months, whereas the other 8 withdrew prematurely. At baseline, median pain severity (4.9, interquartile range [IQR] 3.6-6.0) and pain interference (4.3, IQR 2.1-5.9) scores were significantly higher compared with pain scores after wearing the compression vest for 6 months (1.8 IQR 1.0-4.8 and 1.4 IQR 0.9-4.4, resp.). Patient-reported breast/chest wall swelling decreased from 92% ( n  = 22) at baseline to 71% ( n  = 12) at 6 months. The prevalence of moderate/severe patient-reported breast/chest wall pain declined from 63% ( n  = 15) at baseline to 18% ( n  = 3) at 6 months. Physical, emotional, and social functioning improved over time and was comparable to scores of the Dutch reference population. Conclusion: The results of this pilot study suggest that a compression vest could be an acceptable and effective treatment option for patients with painful breast/chest wall edema. In compliant patients, swelling and pain was significantly reduced.

Background: Chronic edema is a condition posing a high burden on patients. The primary aim of the study was to assess the health-related quality of life (QoL) of adult patients living with chronic edema. Methods and Results: As part of an international, multicenter, prospective study, we prospectively assessed the health-related QoL of adult patients living with a chronic edema using a disease-specific tool and a generic one. In total, 1094 patients were included, aged 57 years on average. The average EQ-5D and LYMQOL visual analogue scale (VAS) scores were equal to 63.6 (SD = 20.2) and 6.3 (SD = 2.0), respectively. After adjustment, the EQ-5D VAS was explained by LYMQOL VAS (β = 7.85; p  < 0.001), age (β = -0.08; p  = 0.02), obesity (β = -1.89; p  = 0.001), and male gender (β = 3.32; p  = 0.002). As for the LYMQOL VAS, it was independently associated with EQ-5D VAS (β = 0.07; p  < 0.001), LYMQOL function (β = -0.21; p  < 0.001), and LYMQOL mood (β = -0.49; p  < 0.001). Conclusion: This study confirms that patients living with a chronic edema experience a poor disease-specific and generic health-related QoL.

Background: Chronic edema is a condition that is biologically complex, distressing for patients and sociopolitically weak. Like many other complex and chronic conditions, it has a low status within health care. The result is that it has a low priority in health policy and consequently is undervalued and undertreated. While evidence-based practice promotes a hierarchy of evidence, it is also the case that clinical practice is influenced by a hierarchy of social status. These are as much political as they are scientific. Methods and Results: This article will provide an explanation for why chronic edema is a low priority. It will do this through a critical review of the literature. We examine this through the theoretical lens of Pierre Bourdieu. The sociology of Bourdieu frames an understanding of power relations through habitus, field, and capital. We will employ these theoretical tools to understand the way that chronic edema is situated within the policy arena. We identify a number of social mechanisms that affect the status of chronic edema, including diagnostic uncertainty, social capital, scientific capital, cultural capital and economic capital. Conclusion: We argue that a whole system approach to care, based on human need rather than unequal power relations, is a prerequisite for the delivery of good health care. The specialty of chronic edema is not a powerless group and we identify some of the ways that the social mechanism that acts as barriers to change, can also be employed to challenge them.

Background: To examine psychological health and perceived social support in patients with chronic edema (CE)., Methods and Results: A random sample of 107 patients with CE was group matched for age and gender with 102 community controls. The cases had swelling of the arm (38%) and leg (61%) and midline swelling (14%). Cases were more likely to be single or divorced/separated (p = 0.041) and have reduced mobility (p < 0.001). They had significantly poorer overall health related quality of life (HRQoL), in particular physical functioning (p = 0.003); role physical (p < 0.001); general health (p = 0.026); vitality (p = 0.015); social function (p = 0.007); and role emotional (p = 0.041). EQ5-D health index scores were significantly reduced in cases by 13 points (p = <0.001, 95% confidence interval 5.8, 21.6). Cases had similar sized social networks to the control group (5.8 vs. 6.6 p = 0.49), but had lower total perceived social support scores (67.8 vs. 76.1 p = 0.018). CE patients used significantly fewer coping strategies (COPE scale) than controls with regard to the following: active coping (p = 0.024); planning (p < 0.001); and use of instrumental support (p = 0.006). Significantly higher levels of coping were used in restraint (p = 0.031), positive reinterpretation and growth (p < 0.001); acceptance (<0.001); denial (p < 0.001); mental disengagement (p < 0.001); behavioral disengagement (<0.001); substance abuse (p = 0.010); and humor (p < 0.001)., Conclusions: Patients with CE have poorer health and greater impact on many aspects of HRQoL. Perceived social support is reduced. Deficits in social function combined with perceived reduction in support, and reduced mental health and emotional scores indicate the risk of psychological issues. Systems of care should offer an environment to address these issues.