Overcoming Barriers to Lymphedema Education and Treatment for Breast Cancer Patients in Rural Eastern North Carolina

Background: Approximately 42% of breast cancer survivors develop clinically detectable lymphedema within 5 years of treatment. Lymphedema risk factors include axillary node surgery, radiation therapy, infection, tumor growth, and obesity. Early intervention and education is crucial to decrease long-term morbidity and improve patient outcomes.¹

Prior to the implementation of the breast navigation program, our institution lacked a standardized patient education and referral process for lymphedema therapy. Patients in rural eastern North Carolina frequently have limited insurance coverage for lymphedema therapy and garments. Our county also lacks certified lymphedema therapists (CLTs) who accept Medicaid.

Objectives: 1) Increase early detection of lymphedema by providing education on risk factors, signs/symptoms, and preventive measures of lymphedema; 2) Identify and refer high-risk and symptomatic patients to CLTs for treatment; 3) Assess patients for financial barriers; and 4) Provide financial assistance to patients identified as having financial barriers to lymphedema care.

Methods: The breast cancer navigator (BCN) sought grant funding to implement an education program for all breast cancer patients and provide financial assistance to the underserved for lymphedema therapy and compression garments. A Susan G. Komen grant of $49,600 was awarded. Personalized sessions were held, including verbal instructions and written materials specific to risk factors, signs/symptoms, and early interventions for lymphedema. Financial need was based on assessment by the BCN or CLT after discussion with patients. Patients with identified financial barriers received assistance and were referred to CLTs or certified fitters for lymphedema therapy and/or compression garments.

Results: During the 18-month grant period, the BCN or CLT provided teaching sessions to 130 patients. Financial assistance was provided to 93 under/uninsured patients. Therapy alone was provided to 5 patients, therapy and garments to 26 patients, and garments alone to 62 patients. The average financial assistance provided was $533. Treated patients had an average limb size decrease of 6.4 cm.

Conclusions: Implementation of the standardized education process was successful and continues to be reinforced through long-term survivorship care. However, financial barriers continue to exist for many patients. Currently, our breast program is advocating for an on-site CLT. We continue to pursue grant opportunities to overcome the financial barriers of lymphedema care.

Reference

1. Fu MR, Chen CM, Haber J, et al. The effect of providing information about lymphedema on the cognitive and symptom outcomes of breast cancer survivors. Ann Surg Oncol. 2010;17:1847-1853.