Secondary lymphedema is one of many adverse consequences after cancer treatment,1–3 resulting in severe physical symptoms as well as decreased quality of life and daily functioning.4 Self-care can maintain the results of complex decongestive therapy (CDT),5 , 6 but adherence to recommendations is reported to be lacking.7 Lymphedema is the accumulation of interstitial fluid due to damage in the lymphatic system.8 The incidence of lymphedema after breast cancer treatment is estimated to be approximately 20%,9 , 10 with an increased risk on axillary dissection and radiation. The incidence of lymphedema after cervical and endometrial cancer treatment is approximately 30%.3 , 11
The most common treatment of lymphedema is CDT, which includes manual lymphatic drainage, compression, and education in self-care including exercises stimulating the lymphatic and venous return from the limbs, self-lymphatic drainage, and compression therapy.12 Self-care is an essential, lifelong component in the management of secondary lymphedema. Clinically, self-care includes special movements to stimulate the lymph flow, bandaging, how to use sleeves and hosieries, skin care, and adjustment to daily life and work.13–15 In a wider sense, self-care includes psychosocial aspects, activities influenced by coping with self-care, and cooperation with others helping them or not.16 According to one previous qualitative study, acceptance may also be an important process when adjusting to self-care.17
When feeling confident managing self-care, survivors may be more likely to adhere to recommended strategies. In a recent study, self-efficacy and self-regulatory skills to decrease distress were seen to be important factors to perform self-care after breast cancer treatment.18
Although lymphedema causes significant distress for cancer survivors,4 self-care may be a real challenge in the lifelong perspective. Few and small studies have investigated the underlying factors determining whether survivors perform self-care,17 and knowledge is needed to identify cancer survivors possibly needing extra support to perform self-care. The purpose of this study was to investigate performance of self-care in female cancer survivors with secondary lymphedema and to investigate possible characteristics of the survivors related to performance of self-care.
This is a cross-sectional cohort study of self-care in an ordinary clinical setting, long-term after cancer therapy.
Inclusion and Setting
One hundred nine female survivors with secondary lymphedema after breast and gynecological cancer were screened for participation within the geographical area of 2 hospitals and 1 primary health care unit in Sweden. There was no dropout from baseline. Physiotherapists with special education in lymphedema treatment invited the women for participation either at a clinic or through advertisements in patient organization papers.
The inclusion criteria were the diagnosis of secondary lymphedema of the arm after breast cancer or in the leg after gynecological cancer irrespective of duration since cancer therapy and ability to speak and understand Swedish.
Exclusion criteria were ongoing intensive CDT, recurrence of cancer, and ongoing active oncological treatment.
After study participation, the women were evaluated in an interventional study regarding the effect of physical exercise compared with ordinary care, including self-care, reported elsewhere.19 The research protocol was reviewed and approved by the Ethics Committee, Karolinska Institutet, Stockholm, Sweden.
Subjective Data Collection Using a Study-Specific Questionnaire
The study physiotherapist gave the cancer survivors a questionnaire along with a prepaid envelope, which was posted to the study evaluator. To maintain confidentiality, each woman was given a number for identification. All women signed an informed consent.
Within the research group Clinical Cancer Epidemiology at the Karolinska Institute, a study-specific lymphedema questionnaire was developed in accordance with a method used in more than 80 articles within the research group.20–23 In summary, the questionnaire was developed during a qualitative phase. Women with secondary lymphedema (n = 8) were interviewed about self-care and lymphedema.17 On the basis of the interviews, survey of other validated questionnaires and the authors' long clinical experience, a questionnaire was constructed. Validity was then tested at first in 12 individual face-to-face-validity interviews and, second, as a group discussion, which resulted in only small clarifying adjustments. The adjusted questionnaire was then tested in a pilot study including 14 cancer survivors with secondary lymphedema, showing good feasibility in the study population. Of the 108 questions, we report the questions related to the purpose of our study, as described later.
Performance of Self-care
Definition of self-care in the present study: Self-care is management of a condition performed not only by the individual but also influenced by social and psychological factors.
The outcome, performance of self-care, was studied using 4 study-specific questions: “How often do you do self-care at home?” “How often do you do self-care at work?” Answering alternatives were “never,” “a couple of times per week,” “once a day,” or “more than once a day.” “Can you take care of your lymphedema in the way that you wish with self-care?” “Do you think that the self-care helps?” Answering alternatives were “not at all,” “a little,” “moderate,” or “much.”
Sociodemographic and Clinical Characteristics
We addressed sociodemographic questions as age, debut of lymphedema, educational level, ethnicity, and employment status and asked whether the survivors had received information in self-care, instructions in self-care, and about their confidence in health care. The 4 answering categories were “no” to “much.” We also asked for quality of near relations and other relations; the answers were categorized from worse scenario to best scenario in a numeric rating scale (NRS) with 7 steps.
Objective Data Collection
Lymphedema (limb volume) was measured with either water displacement or circumference with tape measurement, depending on clinical routine used at the different clinics. The methods are highly correlated with each other with high reliability and validity.24 Body mass index was self-reported as weight and length by the participant and calculated as follows: weight [kilograms]/(length [meter]).2
Physical function for upper extremity was measured with DASH (Disability of Arm, Shoulder and Hand) score and HOOS (Hip Osteoarthritis Outcome Score) for function in lower extremities. Both scales are found to be valid and reliable.25 , 26
Individual characteristics was general well-being, physical condition, acceptance of having lymphedema, depressed mood, anxious mood, quality of sleep, body image, and self-esteem. The women answered these questions on the NRS or 4-stage Likert scale.
We calculated descriptive statistics in terms of numbers (n) and proportions (%) of women answering each alternative and calculated mean values with standard deviation regarding continuous variables. We dichotomized the 4-grade outcome variables regarding performance of self-care: “Do self-care at home” or “Do self-care at work” into 2 groups: “A couple of times per week or less” or “Once per day or more.” We did similarly for the questions if the women felt that “they could take care of their lymphedema” and if “self-care helped” by alternatives “no/little” or “moderate/much.” To assess possible relations between the characteristics of the survivors and these outcomes, we calculated odds ratios (OR) together with 95% confidence intervals (CI) between different subgroups of women according to the subjective and objective measured variables, using logistic regression. For each variable, the choice of reference group was done a priori based on which group we anticipated to have the strongest starting position. To secure that the variation of risk in different subgroups was not associated with variations in the possible confounding factor edema volume, ORs were adjusted for volume of arm edema in the breast cancer survivor group. Because of the low numbers, this was not calculated for women with leg edema.
We calculated Spearman's r correlation coefficient for the ordinal or continuous subjective and objective possible characteristics to assess trends toward higher (or lower) levels in the outcomes across all levels of the characteristics. We performed all tests 2-sided at 5% significance level. The number of participants included after omitting missing values is presented for each calculation. All calculations were done with SAS (version 9.4; SAS Institute Inc, Cary, North Carolina).
Of 109 female cancer survivors screened for inclusion, 88 were included and data for 83 women were collected. Their mean age was 62 years, and 69 (83%) and 14 (17%) women had arm and leg lymphedema, respectively. Debut of the lymphedema varied, with 48% diagnosed more than 5 years previously and 18% within a year before the study. Most frequently, women who participated in this study were born in Sweden (83%), had a high school or university education (48%), and were overweight or obese (73%). A majority of women had accepted their lymphedema diagnosis (62%), and most had moderate to high well-being (95%). Thirteen percent reported depressive mood and 16% anxious mood often (Table 1).
Frequency of Performing Self-care
Among 83 women, 45 of 81 (56%) women performed self-care at home at least once every day. Self-care at work was more seldom performed: Of the 29 women who worked, 6 (21%) performed self-care at least once every day (Figure 1).
Thirty-five (43%) women thought that self-care helped moderate to much, 39 (48%) thought that it helped a little, and 5 (6%) felt that it did not help at all. Thirty-three (41%) women felt that they could perform self-care of their lymphedema moderate to much, 35 (44%) thought that they could take care of themselves a little, and 12 (15%) thought that they could not perform self-care of their lymphedema at all (Figure 2).
Sociodemographic and Clinical Characteristics Related to Self-care
Women with ethnicities other than Swedish had a higher risk to not perform self-care of their lymphedema (OR = 5.3; 95% CI, 1.1-25.6). Those who reported low to moderate quality in their family relations were more likely to think that they could not perform self-care of their lymphedema (OR = 4.5; 95% CI, 1.2-17.3), as were women who reported no or little confidence in health care (OR = 3.3; 95% CI, 1.3-8.4) (Table 3).
There was a negative correlation (r = −0.34, P = .04) with increasing arm limb volume and the extent to how much the women felt that they could perform self-care of their lymphedema. Positive correlations were found between university educational level and experiencing a higher ability to perform self-care of oneself (r = 0.2, P = .03), as well as experiencing that self-care helped (r = 0.3, P = .01). There was a significant positive correlation between perceived amount of information received about self-care and experiencing a higher ability to perform self-care of their lymphedema (r = 0.3, P = .002), as well as the extent that self-care helped (r = 0.3, P = .02). Quality of other relations and how the women managed daily life and had received instruction in self-care (yes or no) had no statistically significant influence on outcomes in self-care (Tables 2 and 3).
Individual Psychological Characteristics Related to Self-care
Reporting low to moderate well-being was associated with a higher risk of not able to perform self-care of their lymphedema (OR = 4.5; 95% CI, 1.7-11.7). There was a significant correlation between degree of well-being and ability to take care of their lymphedema (r = 0.4, P = .001). Women with depressed mood had a negative correlation to perform self-care both at home (r = −0.23, P = .03) and at work (r = −0.33, P = .03) (Table 2). There was a significant negative correlation between anxious mood and self-care at work (r = −0.40, P = .01). The women had a 3 times higher odds of not being able to take care of their lymphedema if their self-esteem was low to moderate (OR = 3.0; 95% CI, 1.2-7.6). There was a positive correlation between self-esteem and the experience that the women could take care of their lymphedema (r = 0.3, P = .02). Women who had accepted that they had lymphedema more often reported that self-care helped not at all or a little (OR = 5.9; 95% CI, 1.6-22.4) and double the risk to not perform self-care at work (OR = 0.1; 95% CI, 0.0-0.7) (Tables 2 and 3).
Individual Physical Characteristics Related to Self-care
There was a small but significant positive correlation between self-care and quality of sleep (r = 0.2, P = .04). There was also a significant positive correlation between physical condition and to perform self-care at work (r = 0.34, P = .03) and perform self-care of their lymphedema (r = 0.27, P = .01). Little to moderate trust in one's body was associated with a higher risk to not perform self-care at home (OR = 3.7; 95% CI, 1.2-11.2), and women who reported moderate to much difficulties accepting their body had a higher risk to report that they could not perform self-care of their lymphedema (OR = 3.9; 95% CI, 1.0-15.3) (Tables 2 and 3).
Functional Characteristics Related to Self-care
There was no correlation between functional characteristics and the outcomes for self-care (data not shown).
Among female cancer survivors with secondary lymphedema, almost 60% performed self-care almost every day despite the fact that half of all women reported that self-care did not help. At risk for not performing self-care were women with low well-being, women who reported difficulties accepting their body, and women with ethnicities other than Swedish. Furthermore, factors such as depressed mood or anxious mood, low self-esteem, and low quality of sleep were related to performance of self-care.
Frequency of Performing Self-care
Our results emphasize the importance of focusing more on vulnerable individuals when it comes to instructions about self-care and to encourage women to perform continuous self-care. The stepped care model could be a strategy to identify women in need of more support and coaching and capture more than 60% of the women performing self-care each day. The approach consists of basic help for all women and then stepwise progressive interventions for the patients in need of more support. The model also includes coordinating all personnel working with the women to have the same goals to get the patients to reach self-treatment strategies.27 , 28 Support groups could be an advantage in stepwise interventions, earlier described in ovarian cancer. The women who participated shared experience and emotions, as well as emotional support.29 There was also a higher risk among women who had had lymphedema less than 1 year to perceive that self-care did not help. If diagnosed early with small edema volumes and less symptoms, it is reasonable to experience limited results of self-care. This strengthens the fact that it is necessary to continuously prevent lymphedema and inform the importance of self-care even if the female survivors lack symptoms of swelling to counteract progression of the lymphedema.30 The association between the perception of not having received information concerning lymphedema and whether self-care helps is perhaps not surprising. Nevertheless, it reminds us that there are still women who experience that they have gotten no or very little information about self-care and that we as lymphedema workers have to develop self-care instructions and repeat until they have been understood. Another report from Radina et al16 showed that the survivors struggle with time management and to prioritize self-care before care of others, which may also influence how they perceive and perform self-care.
Sociodemographic and Clinical Characteristics Related to Self-care
Self-care is essential for maintaining effects of intensive lymphedema therapy,5–7 and in this study, we have tried to highlight the possible characteristics at risk for not taking care of the lymphedema in female cancer survivors. In our previous study of 616 female cancer survivors, we found a correlation between lower limb lymphedema, quality of life, and sleep,1 which also align with this study. Women with ethnicities other than Swedish were at risk of not performing self-care. One may speculate if this is related to language difficulties and the ability to understand instructions even if a professional interpreter is used. From the clinicians' point of view, it can also be possible that women from some cultures do not have the opportunity to take the time needed for self-care because they are responsible for all household work. Few studies have described the influence of ethnicity in women with secondary lymphedema, although Schmitz et al31 have highlighted the possible relations between ethnicity, obesity, and lymphedema in African American female survivors. Presumably, we could follow up women of other ethnicities more systematically and in an individualized manner and maybe invite their relatives to the clinical appointment to emphasize the need for continuous self-care. The conclusion about body image also suggests that clinicians could invite these women with secondary lymphedema to participate in groups or therapies focusing on body awareness, since support groups have been shown to be helpful.32 It seems that there is an association between not accepting the lymphedema and the perception that self-care helps, and this has also been shown in one earlier study,17 indicating that we must be more aware of these individuals.
Individual Psychological Characteristics Related to Self-care
We found that a high well-being and the absence of depressed and anxious mood are important factors, correlating to the ability to take care of lymphedema and to perform self-care. In line with our study, Thomas and Hamilton33 reported that secondary lymphedema after cancer could be an immediate first step in recognizing the physical and emotional dimensions of the condition. Increased awareness is needed and psychosocial support is required.33 Furthermore, Teo et al34 reported that body image was influenced by and related to depressive symptoms when having lymphedema.
We also found that negative body image influenced how and whether women performed self-care. Hence, motivating women with secondary lymphedema, body image issues, and acceptance of the body are factors that need to be addressed.
Self-care is most commonly described as wearing compression sleeves, performing exercise, bandaging, performing skin care, holding the arm or leg high, not damaging the swollen limb, and not lifting heavy things.18 A consensus definition would help make comparisons between different studies. The definition in this study may be a direction to develop and extend the definition of self-care, as we also showed in an earlier study by adding psychosocial factors.17
Limitations and Direction for Future Work
This study has strengths that need mention. We used a validated instrument; methodically developed in close relation to female cancer survivors with secondary lymphedema in line with the method we have developed in self-reported outcomes,20–23 which we believe had a great effect on the validity of the results. The characteristics were analyzed from individual, social, and psychological perspectives, which we also believe can be strength of the results. The women answered the questionnaires in their home environment, which lowers the risk of interviewer-induced bias. The study has no baseline dropout, which also strengthens the results of the study.
Although our study has strengths, it also has limitations that need to be addressed. Maybe, a larger study could have strengthened and influenced our results. The fact that the study was conducted in Sweden can limit generalizability to other cultures and populations outside Sweden.
Clinical Implications and Suggestions for Practice
Self-care is something necessary to maintain results from CDT.12–15 To support female cancer survivors with secondary lymphedema to perform self-care, lymphedema health care programs could individualize advice and follow-up. As an implication of our study, health care professionals could consider to identify and provide extra support to women with characteristics related to not performing self-care: low well-being, difficulties accepting their body, ethnicities other than the majority population, depressed or anxious mood, low self-esteem, and low quality of sleep. To better synchronize our goals and expectations related to self-care, we should endeavor to form a working alliance with the cancer survivors with lymphedema.
The findings of our study highlight the significance of well-being, body image, and ethnicity in relation to self-care as important characteristics of self-care in female cancer survivors with secondary lymphedema. The study also suggests possible negative characteristics regarding depressed mood, anxious mood, low self-esteem, whether the woman has not accepted the disease, and perceived lacking information in self-care.
The authors especially thank the female cancer survivors' contribution to the study as well as the lymphedema clinics in Stockholm, Sundsvall, and Linköping, Sweden, and the patient societies that enabled the study.
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Keywords:©2018 Wolters Kluwer Health Inc.
characteristics; performance; physiotherapy; secondary lymphedema; self-care