Correlates of Lymphedema Severity and Access to Intervention

Institution: Women's Cancer Resource Center
Investigator(s): Rani Eversley, Ph.D. - Linda Wardlaw,  - Dolores Moorehead, MA -
Award Cycle: 2003 (Cycle IX) Grant #: 9AB-2200 Award: $107,396
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

Initial Award Abstract (2003)
Our research team is a collaboration of university and community-based womens' health researchers and service providers studying return to work among breast cancer survivors. Our data suggests that ethnic minority women report more arm swelling and pain (presumably lymphedema). We have also learned from our research participants that many were not informed about the possibility of developing lymphedema prior to breast cancer surgery and thus were unable to take any preventive measures. When we investigated the availability of educational materials we discovered that many are inconsistent, noncomprehensive, and often contain components that need to be purchased. The goal of the proposed research project is to develop, test and standardize a low-cost intervention to prevent or reduce the severity of secondary arm lymphedema among breast cancer patients.

We wish to test whether women who participate in our lymphedema education intervention may have decreased or less severe lymphedema symptoms. We will do this as a feasibility trial with the goal of fully testing this intervention in a full-scale trial at a later date.

We propose a descriptive study to develop the components of the Total Arm Care (TAC) Program and a pilot clinical trial to test the TAC Program. For the descriptive study, four focus groups of 8 women each will be convened at the Women's Cancer Resource Center (WCRC). For the pilot clinical trial women will be recruited and assigned to the TAC or a similar attention comparison group. Women will be measured at baseline prior to surgery, at one month post-surgery, at four months and at eight months. The intervention will be delivered four weeks after their surgery (we need to determine the optimal time using the focus group information). Participants will be recruited from WCRC, the Alameda County Cancer Navigator Program at Alameda County Medical Center (Highland Hospital), and the Charlotte Maxwell Clinic Complementary Clinic (CMCC).Innovative elements of the project in non-technical terrns:

If effective, the TAC program will provide a simple, standardized, and culturally sensitive psychoeducational program to assist women with reducing the onset of lymphedema after breast cancer treatment. Resulting education materials will be distributed at no cost through WCRC, CMCC, and the Cancer Navigator as well as other community cancer treatment settings.

Final Report (2006)
The specific aims of this project were to develop and pilot test the Total Arm Care Intervention (TACI) - a psycho-educational intervention to reduce risk for lymphedema among women undergoing treatment for breast cancer.

Qualitative data regarding need for the intervention were collected from 3 focus groups (N=28). Eight of the participants were African American, 9 were Caucasian, 6 were Latina, and 5 were Asian. Two focus groups were conducted in English (1 at WCRC, 1 at Highland Hospital). One focus group was conducted in Spanish (at WCRC). Themes from the English speaking focus groups included: 1) women wished that they had been told about lymphedema prior to their surgery, 2) they were most often told by a nurse or cancer patient navigator, rather than by their physician, 3) breast cancer support groups help with dealing with lymphedema, 4) women were motivated to do whatever stretching exercises they were given, 5) stretching exercises were generally drawn in stick figures on paper and Xeroxed, 6) stretching exercises (finger walking, arm lifts, broomstick) help with pain, 7) infections in the lymphedema affected arm can be very bad even life threatening. Additional themes from the Spanish speaking group included: 1) providers do not take requests to avoid puncturing the affected arm seriously (one women reported that her physician attempted to give her chemotherapy through her lymphedema affected arm), 2) lymphedema related information is only offered in English, 3) stretching exercises are difficult to do when you are tired from work, 4) it is difficult to do stretching exercises from examples on paper.

For the intervention stage of our project the intervention manual and pre and post measures were developed. Five women were recruited surveyed and measured. All women were recruited from posted notices at health care settings. Participants included 3 Asian women (ages 55, 47, 44), 1 Caucasian woman age 51, and 1 Latina, age 27. Three participants had not been informed about lymphedema prior to their interview, two had been informed. Those who had been informed were told by Cancer Navigators.

Data collected suggests a need to offer information regarding prevention and management of lymphedema early in breast cancer treatment. Such information may assist to prevent and reduce arm symptoms as well as educate patients to seek prompt medical attention when symptoms appear.

Completion of project recruitment was delayed due to unexpected institutional barriers and expiration of allotted grant award time.