Online Patient Resources for Breast Implant-Associated Anaplastic Large Cell Lymphoma: A Readability Analysis.

Abstract

Breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) is an emerging issue facing the medical community. Government organizations such as the US Food and Drug Administration and specialty groups including the American Society of Plastic Surgeons have published online resources about BIA-ALCL for patients. Given the complexity of the diagnosis, it is important that patients can easily read these resources. In this study, we examined the readability levels of online BIA-ALCL patient resources using multiple verified reading scores. "BIA-ALCL" and "breast implant-associated anaplastic large cell lymphoma" were entered into 3 Internet search engines. The top 20 results for each were filtered by resource type and intended audience (physician vs patient). Published scientific articles, online database physician resources, and Web sites requiring subscriptions or fees were excluded. We then examined the readability of each with multiple verified reading scores, including the Flesch-Kincaid, Gunning-Fog, Coleman-Liau, Simplified Measure of Gobbledygook, and Automated Readability Index indices. Obtained data were analyzed using descriptive statistics and t test for independent samples. Fifteen Web sites qualified for further analysis. For all texts, the average readability level was measured between 12 and 13 years of education on each readability index or approximately 18 to 19 years old. The Flesch-Kincaid Reading Ease average was 43.16 ±10.9 on a scale of 1 to 100, corresponding to a "difficult" designation. When compared by search criteria (spelled-out vs abbreviated), the results for the abbreviation "BIA-ALCL" had higher education requirements than those with the condition spelled out. However, these differences were not statistically significant. There was also great variation in word and sentence measurements. Twelve of the 15 Web sites contained more than 15% complex words, having more than 3 syllables, with breastcancer.org having the lowest (11%) and plasticsurgery.org the highest (20%). Since the initial announcement in 2014 by the National Cancer Comprehensive Network, the medical community has begun educating ourselves and our patients about BIA-ALCL. Unfortunately, this study suggests that online patient resources on BIA-ALCL may be too complex for most readers, exceeding that of the average US resident (eighth grade) and Medicare beneficiary (fifth grade). Although the goal of learning more about BIA-ALCL and counseling patients appropriately remains paramount, we should continue to improve patient education materials given their vital role in healthcare decision-making.