Understanding Patient Expectations of Lymphedema Surgery
Artur Fahradyan, MD, Bassim El-Sabawi, BS, Ketan Patel, MD.
University of Southern California, Los Angeles, CA, USA.
Introduction: Patients with lymphedema refractory to medical treatment often have unrealistic expectations for lymphedema surgery. The purpose of this study was to assess patient expectations following lymphedema surgery.
Methods: Patients presenting to clinic for initial evaluation for lymphedema surgery since January 2017 were offered to complete a survey designed to evaluate their expectations for limb appearance, limb function, and overall well-being following lymphedema surgery. The patients were instructed to score each item utilizing a 5-point scale for improvement (5-complete; 4- significant; 3-moderate; 2-mild; 1-no improvement). No score was given if the patient answered “does not apply” to a question or left it blank. A mean total expectation score was calculated, which was then used to estimate the effects of pre-operative variables on patient expectations using multiple regression analysis.
Results: A total of 21 females and 2 males completed the survey with a mean age of 60 (36-80, SD 13.5) years. The upper limbs were affected in 10 and lower limbs in 13 patients. Physicians were the initial source of information about lymphedema surgery as a potential treatment option in 10 patients (43%), whereas 8 (34.8 %) patients initially learned about lymphedema surgery from non-physician health care professionals, 1 (4.3 %) from family/friends, and 4 (17.4 %) from the internet. Based on prior experience with non-lymphedema specialist physicians, only four (17.3 %) patients believed physicians had excellent or good knowledge about the utility of lymphedema surgery as a treatment strategy, whereas two (8.7 %) thought they had fair knowledge, and 13 (56.5 %) thought they had poor knowledge.
The mean expectation score for improvement in limb appearance was 3.7 (2.5 - 5.0, SD 0.77), limb function 3.5 (1.0 - 5.0, SD 1.3) and overall well-being 3.4 (1.5 - 5.0, SD 1.02). The mean total expectation score following lymphedema surgery was 3.5 (2.0 - 5.0, SD 0.85). Multiple regression analysis showed that the patients' level of education (p - 0.045), disease duration (p - 0.027) and the method of first learning about lymphedema surgery (p - 0.038) had a statistically significant impact on the patients' expectation for lymphedema surgery. The total mean expectation score was inversely related to the patient's level of education and learning about lymphedema surgery from non-physicians. Additionally, disease duration had direct relationship with the patient's total mean expectation score.
Conclusions: Early data suggest that most patients learn about lymphedema surgery from non-physicians late in their disease course with many expecting complete or significant improvement of lymphedema-associated symptoms with surgery. It appears that the level of patient education, source of information and disease duration may impact patient expectations. Most patients also believed that non-lymphedema specialist physicians had fair or poor knowledge about lymphedema surgery as a treatment strategy for lymphedema. These findings raise a concern for possible patients' unrealistic expectations for lymphedema surgery which may be in part due to the lack of knowledge among physicians about surgical treatment options of lymphedema.
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