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David Chang, Joseph Dayan, Phyllis Fried, Ketan Patel, William Repicci, Stanley Rockson, Dhruv Singhal, and Melissa B. Aldrich.
Abstract
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Background: Lymphatic disease patients make up a significant proportion of the US and world populations. Due to inadequate medical school training and underestimation of the impact of lymphatic circulation, lymphatic disease patients often have difficulty finding competent diagnosis and care.
Methods and Results: The Lymphatic Education & Research Network has initiated a Centers of Excellence program to designate institutions that provide services for lymphatic disease patients. Committees of experts drafted standards for five types of Centers of Excellence.
Conclusions: The Centers of Excellence program is now launched, and the description of the formation process herein could provide other organizations guidance for similar ventures.
Johnson AR, Fleishman A, Tran BNN, Shillue K, Carroll B, Tsai LL, Donohoe KJ, James TA, Lee BT, Singhal D.
Abstract
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Background: Lymphedema is a chronic condition that carries a significant physical, psychosocial, and economic burden. The authors' program was established in 2017 with the aims of providing immediate lymphatic reconstruction in high-risk patients undergoing lymphadenectomy and performing delayed lymphatic reconstruction in patients with chronic lymphedema. The purpose of this study was to describe the authors' clinical experience in the first year.
Methods: A retrospective review of our clinical database was performed on all individuals presenting to the authors' institution for lymphatic surgery consideration. Patient demographics, clinical characteristics, and surgical management were reviewed.
Results: A total of 142 patients presented for lymphatic surgery evaluation. Patients had a mean age of 54.8 years and an average body mass index of 30.4 kg/m. Patients with lymphedema were more likely to be referred from an outside facility compared to patients seeking immediate lymphatic reconstruction (p < 0.001). For patients with lymphedema, the most common cause was breast cancer-related. Thirty-two percent of all patients evaluated underwent a lymphatic procedure. Of these, 32 were immediate lymphatic reconstructions and 13 were delayed lymphatic reconstructions. In the authors' first year, 94 percent of eligible patients presenting for immediate lymphatic reconstruction underwent an intervention versus only 38 percent of eligible lymphedema patients presenting for delayed lymphatic reconstruction (p < 0.001).
Conclusions: First-year review of our lymphatic surgery experience has demonstrated clinical need evidenced by the number of patients and high percentage of outside referrals. As a program develops, lymphatic surgeons should expect to perform more time-sensitive immediate lymphatic reconstructions, as evaluation of chronic lymphedema requires development of a robust team for workup and review.
Johnson AR, Asban A, Granoff MD, Kang CO, Lee BT, Chatterjee A, Singhal D.
Abstract
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Objective: This manuscript is the first to employ rigorous methodological criteria to critically appraise a surgical preventative technique for breast cancer-related lymphedema from a cost-utility standpoint.
Summary of background data: Breast cancer-related lymphedema is a well-documented complication of breast cancer survivors in the US. In this study, we conduct a cost-utility analysis to evaluate the cost-effectiveness of the LYMPHA.
Methods: Lymphedema rates after each of the following surgical options: (1) ALND, (2) ALND + LYMPHA, (3) ALND + RLNR, (4) ALND + RLNR + LYMPHA were extracted from a recently published meta-analysis. Procedural costs were calculated using Medicare reimbursement rates. Average utility scores were obtained for each health state using a visual analog scale, then converted to quality-adjusted life years (QALYs). A decision tree was generated and incremental cost-utility ratios (ICUR) were calculated. Multiple sensitivity analyses were performed to evaluate our findings.
Results: ALND with LYMPHA was more cost-effective with an ICUR of $1587.73/QALY. In the decision tree rollback analysis, a clinical effectiveness gain of 1.35 QALY justified an increased incremental cost of $2140. Similarly, the addition of LYMPHA to ALND with RLNR was more cost-effective with an ICUR of $699.84/QALY. In the decision tree rollback analysis, a clinical effectiveness gain of 2.98 QALY justified a higher incremental cost of $2085.00.
Conclusions: Our study supports that the addition of LYMPHA to both ALND or ALND with RLNR is the more cost-effective treatment option.
Anna Rose Johnson 1, Andres F Doval, Sabine A Egeler, Samuel J Lin, Bernard T Lee, Dhruv Singhal
Abstract
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Background: Breast cancer is the leading cause of death in the US Hispanic females. This demographic is more likely to present with later-stage disease and require more extensive surgical treatment, including axillary lymph node dissection, which increases risk of lymphedema. The Spanish-speaking Hispanic population has a lower health literacy level and requires materials contoured to their unique needs. The aim of this study was to evaluate online Spanish lymphedema resources.
Methods: A web search using the Spanish term "linfedema" was performed, and the top 10 websites were identified. Each was analyzed using validated metrics to assess readability, understandability, actionability, and cultural sensitivity using the SOL (Simplified Measure of Gobbledygook, Spanish), Patient Education and Materials Assessment for Understandability and Actionability (Patient Education and Assessment Tool), and Cultural Sensitivity and Assessment Tool (CSAT), respectively. Online materials were assessed by 2 independent evaluators, and interrater reliability was determined.
Results: Online lymphedema material in Spanish had a mean reading grade level of 9.8 (SOL). Average understandability and actionability scores were low at 52% and 36%, respectively. The mean CSAT was 2.27, below the recommended value of 2.5. Cohen κ for interrater reliability was greater than 0.81 for the Patient Education and Assessment Tool and CSAT, suggesting excellent agreement between raters.
Conclusions: Available online Spanish lymphedema resources are written at an elevated reading level and are inappropriate for a population with lower health literacy levels. As patients continue to use the internet as their primary source for health information, health care entities must improve the quality of provided Spanish resources in order to optimize patient comprehension.
Tran BNN, Singh M, Lee BT, Rudd R, Singhal D.
Abstract
Background: Over 72% of Americans use online health information to assist in health care decision-making. Previous studies of lymphedema literature have focused only on reading level of patient-oriented materials online. Findings indicate they are too advanced for most patients to comprehend. This, more comprehensive study, expands the previous analysis to include critical elements of health materials beyond readability using assessment tools to report on the complexity and density of data as well as text design, vocabulary, and organization.
Methods: The top 10 highest ranked websites on lymphedema were identified using the most popular search engine (Google). Website content was analyzed for readability, complexity, and suitability using Simple Measure of Gobbledygook, PMOSE/iKIRSCH, and Suitability Assessment of Materials (SAM), respectively. PMOSE/iKIRSCH and SAM were performed by two independent raters. Fleiss' kappa score was calculated to ensure inter-rater reliability.
Results: Online lymphedema literature had a reading grade level of 14.0 (SMOG). Overall complexity score was 6.7 (PMOSE/iKIRSCH) corresponding to "low" complexity and requiring a 8th-12th grade education. Fleiss' kappa score was 80% (P = 0.04, "substantial" agreement). Overall suitability score was 45% (SAM) correlating to the lowest level of "adequate" suitability. Fleiss' kappa score was 76% (P = 0.06, "substantial" agreement).
Conclusions: Online resources for lymphedema are above the recommended levels for readability and complexity. The suitability level is barely adequate for the intended audience. Overall, these materials are too sophisticated for the average American adult, whose literacy skills are well documented. Further efforts to revise these materials are needed to improve patient comprehension and understanding.