Self performed treatment in female cancer survivors with secondary lymphedema

Abstract: Background and aim: Many female cancer survivors who suffer from the consequences of secondary lymphedema experience physical, physiological and social limitations. Many studies have been made of some elements of self-care in the management of lymphedema but there are few if any studies of all of the potential elements that self-care might consist of. Therefore the overall aim of this study was to identify and then explore as many of the different elements of self-care as possible that are applicable in dealing with secondary lymphedema in female cancer survivors. Methods: In study I, a cohort of women (n=786) treated with radiotherapy after gynecological cancer treatment answered a study-specific questionnaire. In study II women (n=8) were interviewed about self-care. Study III was a cross-sectional study (n=83) and the women answered a study-specific questionnaire. The same women were included in study IV, a clinical controlled intervention (n=88). The women answered a lymphedema study-specific questionnaire and a questionnaire on daily function. The women were also measured for the outcome limb volume, joint movement and BMI. Results: In study I, overall quality of life was significantly lower among women with LLL, with a RR 1.4, 95 % CI 1.2-1.7. The women reported that LLL had a negative impact on several daily activities. In study II self-care as practiced by these women consisted of elements that were physical, physiological and social. The emerging themes were: Acceptance, Recovery, Physical activity, Manageability, Obstacles, Social self-care, Manual self-treatment and Ergonomics. In study III, women with low well-being (OR= 4.5, CI 1.7-11.7) not accepting their body (OR= 3.9, CI 1.0-15.3) and ethnicities other than Swedish (OR= 5.3, CI 1.1-25.6) were observed to engage less in self-care of their lymphedema. Not accepting lymphedema was a risk to think that self-care did not help (OR= 5.9, CI 1.6-22.4). Sleep quality and self-care were correlated (r = 0.2, p = 0.04). In study IV, there was a higher percent of women who participated in water exercise and who thus reduced their arm limb volume (p=0.029), BMI (p=0.047) and self-reported swelling (p= 0.031). Women in land exercise improved their DASH scores (p=0.047) and outer rotation in the shoulder (p= 0.001). Conclusions: Lower Limb Lymphedema has a negative impact on quality of life, affects sleep and daily life activities, yet few women seek professional help. Self-care involves physical, psychological and social aspects and acceptance may have an influence on if and how the women do self-care. Almost 60 % of the women performed self-care every day despite the fact that 50 % of them reported that self-care did not help. Furthermore, at risk of not taking care of themselves with self-care were women with low well-being, women who reported difficulties in accepting their body and women with ethnicity other than Swedish. We found that a greater percent of women decreased their secondary lymphedema volume, BMI and frequency of swelling after engaging in water exercise than in land exercise. In the land group, improvements were shown in daily shoulder function, and in outer rotation of the shoulder. Implications: It is important to actively ask patients at risk for lower limb lymphedema about early signs of lymphedema and then help them to get early treatment. We could do more to empower the patients to see the good things within themselves and have an open dialogue about obstacles, frustration and guilt about not doing enough in the field of self-care. Social support can increase the patients’ self-esteem. Low well-being, negative body-image and ethnicity other than Swedish can be factors worth registering in medical records so they can be taken into consideration in helping vulnerable individuals adjust to self-care. Water-based exercise can be appropriate treatment influencing and improving limb volume and BMI. Land-based exercise can be appropriate treatment resulting in improved shoulder function in these patients. Adequate evidence-based programs are needed.