In the first installment of the obesity and lymphedema survey we looked at the effect of weight on the degree of lymphedema and swelling. The responses of over 100 women showed that, on average, the women of normal weight reported that they were bothered by the effects of were very mild. These women reported that lymphedema effected them only a little bit if at all. However, as the average weight increased, the degree to which these women felt they were bothered by lymphedema increased. The women whose average weight was 175 pounds felt they were somewhat bothered by the effects of lymphedema and the women who weighed more than 200 pounds felt they were effected by lymphedema quite a bit to very much. This installment of the survey is aimed at evaluating the emotional aspects of lymphedema and weight. Again, as with any survey, this data is collected from those who respond to the survey. This analysis is of approximately 100 women and will reflect the answers provided by this group. As more people answer the survey, the results are increasingly reliable. I hope these results will help generate further thought and discussion.
For the analysis I divided the patients into 4 approximately equal groups based on weight. The first chart shows how these patients were divided. The average weight of group one is 133 pounds, while the average weight of group 2 is 175 pounds, group 3 is 224 pounds and group 4 is 337 pounds. While the weight is different among these 4 groups, the average age is about the same at 45 to 49 years. Also, the range of heights is about the same, ranging from 4 feet, 11 inches to 5 feet 9 inches in group one. Group 4, the heaviest group, has a similar range of heights, ranging from 5 feet, 1 inch to 5 feet, 11 inches. So, the age and heights of these 4 groups are similar but the weight for each of these groups is different. If we compare the responses of these 4 groups to several questions, we can assess the impact of weight on lymphedema.
"I am bothered by the effects of lymphedema."> The graph of the responses to this question is shown below. Very clearly, the effects of lymphedema are felt to be worse by those in the greater weight groups. This does not necessarily mean that they have worse edema, but it suggests that when they do have lymphedema, the effects are worse. These effects could include difficulties moving the affected limb, recurrent infections or difficulties finding appropriate clothing.
"I have swelling." This question simply asks whether a person has swelling and if so is there a little swelling or a lot of swelling. The responses to this question are interesting. First, it is clear that even the patients in the lowest weight group report significant swelling, with the average being between somewhat and quite a bit. However, the degree of reported swelling increases with each weight group, suggesting that the extent of edema is worse as weight increases. From the previous figure we find that the effects of lymphedema are worse as weight increases and in that case it appears that the effects are more pronounced as weight increases. For example, a woman of normal weight who reports that she has some swelling is less likely to feel she has significant effects from it than someone with a similar amount of swelling but a greater weight.
"I have infections in the affected limb." "I use antibiotics for infections in the affected limb." For some time I have felt that infections are more common among patients who weigh more. In fact, this chart demonstrates that the number of infections and severity increases with weight. Patients in the lower weight group report relatively few infections and infrequent need for antibiotics. In contrast, it is common for patients in the highest weight group to report infections and need for antibiotics. Of course, this does not mean that patients in the lower weight groups do not get infections. I have had many patients with normal weight who get infections and need treatment. This does suggest that the frequency and perhaps the severity of infections are worse in patients who weigh more.
"Because of weight lymphedema, I have trouble meeting the needs of my family." These are two related questions that are used in our quality of life studies to assess how an illness impacts family life. When someone cannot do the things necessary to meet their families needs, then the quality of their life may be significantly impaired. Simple things like making dinner or going out for a walk with the family become difficult or impossible. Clearly, as weight increases, it becomes a significant factor in a woman's ability to meet the needs of her family. However, in all groups, they report that the edema causes more impairment than weight. This suggests that treating lymphedema can significantly improve the quality of life for all patients, but especially for those whose weight is higher.
"I am satisfied with how I am coping with lymphedema" When asked about how well they were coping with lymphedema, these same women appear to remain generally upbeat and positive. Most of the women felt they were coping with lymphedema fairly well. Notably, there was very little difference among the different weight groups as to how well they felt they were coping with lymphedema. So, while increased weight is associated with increased edema and greater limitations in daily activity and increased number of infections (link to previous graphs), they remain relatively positive about how well they are coping with these problems.
"I am losing hope in the fight against lymphedema." The women responding to this survey were again generally positive about their outlook, however, the average response was that they felt that they were "somewhat" losing the fight against lymphedema. This response suggests that they were starting to lose some degree of hope that they would overcome lymphedema. It is notable, however, that weight had no impact on whether a woman felt hopeful about winning the fight against lymphedema.
"I get emotional support from my family." In the previous eNews I also examined the effects of weight and lymphedema on the ability of a woman to meet the needs of her family. In all weight categories, women reported that lymphedema had a greater detrimental effect on their ability to meet the needs of their family than weight. However, as the average weight increased, the degree of lymphedema also became worse, impairing their ability to meet the needs of their families. Despite the effects of both weight and lymphedema on a woman's ability to meet the needs of their family, the women responding to this survey feel they get a lot of emotional support from their families. When comparing the effects of weight, there was very little difference in the amount of support received from the families among the different weight groups. Regardless of weight or degree of swelling, most of these women felt they had a lot of support from their families.
"I get emotional support from my friends." These women also reported on the amount of support they received from their friends. Again, as shown in the figure below, most women felt they received a lot of emotional support from their friends and weight had very little effect on the amount of support received from friends.
"I am enjoying the usual things I do for fun." There are two points that seems to be important from the responses to this question. First, the women in the lower weight groups still appear to be involved in the activities they enjoy since the responses generally range between somewhat and very much. As we saw in the last eNews, these women felt they had a significant amount of swelling and edema but report that, for the most part, they do not let lymphedema prevent them from doing the things they do for fun. The second point, however, is that the women in the higher weight groups are significantly less able to enjoy the things they usually do for fun. Among the women responding to this survey, as weight increased the women reported they were less able to participate in the activities they enjoyed. The women in the higher weight groups report very limited ability to participate in the activities they enjoy.
To date, this survey has helped answer some important questions concerning the effect of body weight on lymphedema. This study demonstrates a link between increased weight and increased lymphedema and more frequent infections in the affected limb. This study also demonstrates that most of the women with lymphedema have a strong family support system and also feel they have a good support system among their friends. It also appears that most women remain hopeful and optimistic that they will overcome lymphedema; however, it is also evident some women are starting to lose hope. While this study does not yet demonstrate that weight reductions plans will improve lymphedema, it does demonstrate that women in the normal weight range have less swelling, fewer infections and participate more frequently in activities that they enjoy. I will continue this analysis and look more closely at several other emotional aspects of lymphedema.
In the next eNews I will also report on what is viewed as mild, moderate and severe lymphedema by these women. In the medical literature, arbitrary measures are frequently used to define mild, moderate or severe lymphedema. However, such measurements and criteria are arbitrary because the same amount of edema may be considered severe by some women but only mild by others. For example, 1 inch of increased circumference in a woman with thin arms or legs could represent a significant percentage increase in edema while the same 1 inch increase in circumference in a woman with larger arms or legs could represent very mild changes. Therefore, a standard increase in circumference does not, by itself, help to clearly define the extent and degree of lymphedema. Functional limitations are critical and not distinguished by measurements alone. A small increase in edema may be enough to severely compromise a woman's ability to work with her hands or may limit her mobility in ways that dramatically impact her life. Therefore, it is important to understand the impact of lymphedema on daily living not merely the overall increase in size or circumference. Many women included measurements along with this survey. If you or anyone you know wishes to contribute to this survey,Click here.