The results of our study are partly consistent with the findings of previous studies indicating that the BCLE-SEI has acceptable psychometric properties. Overall, the Spanish version of BCLE-SEI (BCLE-SEI-Es) demonstrated adequate construct validity and reliability. In addition, an adequate sensitivity and specificity in the detection of the risk of lymphedema is also demonstrated. These results confirm that the BCLE-SEI-Es can be used as an assessment tool in populations of Spanish women with breast cancer.
Given that the survival rate for breast cancer is improving due to increased life expectancy and technological advances, the likelihood of developing lymphedema as a result of treatment and/or surgery could become greater. The risk of developing lymphedema is present even years after being treated for breast cancer (9,12) and its after-effects cause tremendous physical (25) and psychological impairment to the women who suffer from it (9,26). In addition, Bowman et al. (27) show that individuals with lymphedema sometimes visit multiple specialists about their lymphedema symptoms without receiving an official diagnosis, suggesting the existence of diagnostic disparities. This may lead to a delayed diagnosis and, as a result, a delay in treatment. For this reason, it is extremely important to develop reliable, clinically valid tools for the early identification of lymphedema among breast cancer survivors (10,16,17). There is evidence to suggest that early intervention and detection of subclinical lymphedema reduces the incidence of lymphedema and improves treatment efficacy (28), which would allow women to participate in lymphedema self-management programmes to prevent breast cancer-related lymphedema (29).
Regarding sociodemographic characteristics, in line with other studies (10,17), no differences were found in relation to age, level of education, or marital status, with similar results across groups. However, unlike the Chinese version of the BCLE-SEI (17), statistically significant differences were found for the currently working variable, as the percentage of unemployed women was higher among those diagnosed with lymphedema. Returning to work after being diagnosed with cancer is rarely a problem (14), but studies indicate that the presence of complications, such as lymphedema symptoms, is associated with a lower return to work (30). Differences have also been identified with regard to tobacco use, alcohol consumption, and the treatment received; however, the literature reviewed suggests that these behaviours are not associated with the development of lymphedema, but with the type of treatment received (6,9,12), excess weight, and breast density, among others (26, 31).
Regarding the first part of the BCLE-SEI-Es, symptom occurrence subscale, the principal components extraction analysis showed that the data fitted correctly to a unidimensional structure with an RMSR below 0.1 (RMSR = 0.0881), which explained 45.71% of the variance. This is in contrast to the Chinese version of the BCLE-SEI, whose results conformed to 5 factors (17). Appendix 1 shows the different items assessed, which are all lymphedema-related symptoms (9,10) and, consequently, their greater or lesser presence is directly related to the occurrence of lymphedema.
In the second part of the BCLE-SEI-Es, symptom distress, our results differ from the original scale (16) and the Chinese version (17). The principal components extraction analysis showed that the data fitted correctly to a two-dimensional structure, with an RMSR below 0.08 (RMSR = 0.0533) and 54.77% of the variance explained. The first dimension, the physical-functional factor, includes items 1–13, 15, and 29 (Appendix 2), i.e. all aspects relating to a physical or functional impairment when it comes to housework, leisure activities, or sleep problems resulting from the presence of lymphedema-related symptoms. While sleep problems are not a physical or functional sign, its presence within this dimension can be attributed to the fact that the presence of symptoms directly influences the presence of disordered sleep (32). The second dimension (the psychosocial factor) includes items 14, 16–28, and 30–32 (Appendix 2), i.e. items assessing the emotional and psychological impact of the presence of lymphedema-related symptoms.
Statistically significant differences were observed in BCLE-SEI-Es total scores and subscales, which were higher in the presence of lymphedema, with a moderate or high effect size (20). This suggests that the BCLE-SEI-Es has a strong discriminating power and, as such, is valid for distinguishing between the presence and absence of lymphedema among female breast cancer survivors. Women diagnosed with lymphedema experience continuous distress due to their symptoms and negatively influencing different aspects of their lives.
One of the hypotheses of the study was to check whether the Spanish version of the BCLE-SEI was valid to establish a cut-off point from which to detect those women who were breast cancer survivors who were at risk of developing lymphedema. The data obtained show that, in accordance with the Youden index (24), from a score of 6 in the first part of the BCLE-SEI-Es (symptom occurrence subscale), the tool can discriminate with a sensitivity of the 86% and a specificity of 58% to women without lymphedema who are at risk of suffering from it, which is similar to the results of the English version (10). These data are added to the previous ones to enhance the value of the test and that, by identifying the symptoms related to lymphedema, it is possible to detect those women who may have it in a latent phase even when it is not yet visible.
This tool can therefore be used in clinical settings in Spanish-speaking women to detect lymphedema after being diagnosed with breast cancer even when the presence of symptoms is mild or virtually unnoticeable to the woman herself.
One limitation of our study is that data collection was not mandatory for all the sociodemographic, clinical, and questionnaire items, with the result that some of the participants’ answers were left blank. Due to the longer life expectancy of women diagnosed with breast cancer, some of the participants in the study were over 70 years of age. This was initially a slight limitation when answering the questionnaire using the tablet because they were less proficient with digital devices. Regarding alcohol consumption results, at least one box had a count of less than 5, which should be interpreted with great caution and tested using a larger sample.