In this study of unilateral BrCa survivors in Iowa, 45% had either diagnosed lymphedema (8%) or arm symptoms without diagnosed lymphedema (37%), consistent with other reports.1,2,8
HRQOL was significantly lower in BrCa survivors with diagnosed lymphedema or with arm symptoms without diagnosed lymphedema compared with survivors without lymphedema or arm symptoms. Only 40% of survivors with arm symptoms without diagnosed lymphedema had previously heard of lymphedema; less than 2% had ever received treatment compared with 52% of women with diagnosed lymphedema. These data highlight the lack of knowledge about lymphedema among BrCa survivors, which may have prevented women with arm symptoms from seeking evaluation or treatment. Although women with known lymphedema experienced more arm symptoms on average, women with arm symptoms without diagnosed lymphedema had altered HRQOL in more domains of physical and mental HRQOL. Perhaps not surprisingly, there was a significant dose-response relationship for decreasing SF-36 scores by number of arm symptoms.
Our findings build on two smaller studies that compared the SF-36 in BrCa survivors with and without lymphedema. In unadjusted analyses, Velanovich and Szymanski16
reported that women with lymphedema (n = 11) had lower median bodily pain (P
= .03) and role emotional (P
= .08) scores compared with women without lymphedema (n = 90).16
Wilson et al15
reported lower unadjusted physical component summary scores in BrCa survivors with (n = 32) versus without (n = 78) lymphedema (P
< .005) and nonsignificant differences in mental component summary scores. BrCa survivors with lymphedema had statistically significantly (P
< .005) lower scores for each SF-36 subscale, except mental health. Between-group effect sizes were larger than in our study.15
Participants with lymphedema had average scores that were 1 SD below national norms for physical but not mental health, as was seen in the IWHS, as well as in another report of 48 women with lymphedema,33
but not in the study by Velanovich and Szymanski.16
Our results also add to those from authors who reported decreased HRQOL in BrCa survivors with, versus without, lymphedema using other HRQOL measures.9,12,15,17-19
The SF-12 was used to compare HRQOL in 622 premenopausal BrCa survivors observed prospectively for 3 years; after adjustment for potential covariates, physical and mental HRQOL were lower for survivors with lymphedema versus without.17
In two studies, BrCa survivors with arm symptoms without edema were included.9,18
Kwan et al9
reported that women with lymphedema (n = 14) or arm symptoms without edema (n = 51) had lower (P
< .01) unadjusted mean HRQOL scores compared with asymptomatic/no-edema women (n = 47) for physical functioning, social functioning, and pain symptoms, but not for global QOL. Women with arm symptoms had HRQOL reductions at least as great in magnitude as women with lymphedema, similar to IWHS; however, in IWHS, women with arm symptoms without diagnosed lymphedema had reductions in mental health that were not observed in women with diagnosed lymphedema. Engel et al18
observed 990 BrCa survivors prospectively for 5 years and surveyed them annually to assess HRQOL and arm problems. The majority of annual unadjusted mean HRQOL scores, including the global score, were statistically significantly lower for participants with arm problems compared with BrCa survivors without arm problems. From years 1 to 5, the percentage of participants with arm problems decreased from 47% to 38%; participants whose arm problems improved from years 1 to 2 (n = 87) reported improvements in several HRQOL domains.18
Although there have been some differences across studies in specific domains of HRQOL affected, the general consensus is that HRQOL is lower in BrCa survivors with lymphedema or related arm symptoms compared with BrCa survivors without lymphedema or arm symptoms. Differences in participant age, length of follow-up, surveys, or other aspects of study design may contribute to differences among studies. Women in our study were generally older and further out from cancer diagnosis than in other studies. However, we did not observe confounding or interaction by time since BrCa diagnosis. Because studies have used different methods to present HRQOL data, we chose to present the data in varied ways (means between groups, effect sizes, and proportions of participants 1 SD below the means for US norms and the overall IWHS cohort) to aid in comparison across studies.
Lymphedema improves with complete decongestive therapy, which includes manual lymphatic drainage, compression therapy exercises, and skin/nail care.1
There have been a few, generally small and nonrandomized, interventions that have demonstrated improved mood or HRQOL after intensive reductive therapy.11,34-39
Improved emotional function, sleep quality, dyspnea, and altered sensations (eg, pain and heaviness) were reported in BrCa survivors after one randomized intervention of manual lymphatic drainage.39
Interestingly, some authors have reported that change in limb volume was not statistically correlated with change in HRQOL11,34
However, participants reported greater comfort and strength and reduced limb size at the same time as improved HRQOL.11,34
Swelling is a defining characteristic of lymphedema, but it is not the only symptom; the results of the IWHS suggest that other aspects of lymphedema in addition to swelling, such as pain and altered function or perhaps even knowledge of lymphedema and use of treatment, may impact HRQOL.
In the IWHS, women with arm symptoms without diagnosed lymphedema had lower mental health scores than women with diagnosed lymphedema. The difference may be attributable to bias from cross-sectional methodology or a result of the relatively few women with diagnosed lymphedema compared with women with arm symptoms without diagnosed lymphedema. Alternatively, it is possible that women with known lymphedema had developed adaptation mechanisms to learn to cope with persistent lymphedema and that these mechanisms affect mental health differently from physical health; by comparison, women with arm symptoms without diagnosed lymphedema had poor knowledge about lymphedema. In IWHS, women with diagnosed lymphedema knew of and had used lymphedema therapies to a much greater extent than women with arm symptoms without diagnosed lymphedema (); although they had more symptoms on average, perhaps their lymphedema symptoms were under better control or they were more used to having the symptoms or understood the symptoms in a way that affected mental health.
Strengths of this study include the numbers of participants with lymphedema and arm symptoms within a large population-based sample and the ability to study several potential covariates. Limitations include that analyses were cross-sectional, HRQOL data before BrCa were not available, and lymphedema and arm symptoms data were self-reported. Given the lack of knowledge about lymphedema in women with arm symptoms but without diagnosed lymphedema, these women may have truly had lymphedema and not known it, thereby resulting in a misclassification bias. Data regarding use of lymphedema therapy are limited, and the date of lymphedema diagnosis was unknown, preventing evaluation of the effect of time since lymphedema development on HRQOL. We studied women who survived an average of 8.1 years after BrCa; given the differences between responders compared with nonresponders, findings for the 52% of participants who had previously died or refused the survey could differ and raise the possibility of a response bias in this study.
In summary, both women with diagnosed lymphedema and women with arm symptoms without diagnosed lymphedema had substantially lowered HRQOL compared with BrCa survivors without lymphedema or arm symptoms. Lymphedema had an impact on HRQOL several years after diagnosis (mean, 8.1 years). There was a dose-response relation between the number of symptoms present and lower HRQOL. Knowledge about lymphedema and treatment use was low in survivors without diagnosed lymphedema. There is a growing consensus that women with lymphedema and related arm symptoms have lower HRQOL compared with other BrCa survivors. Further clinical trials will determine whether interventions to improve lymphedema impact HRQOL for BrCa survivors.