RESUMO
Online education materials are widely used by patients and caregivers to understand the management of complex chronic diseases such as heart failure (HF). Organizations such as the American Medical Association and National Institutes of Health recommend that materials be written at a 6th-grade reading level. The current study examined the readability and accessibility of online education materials for patients with HF. Whole page texts from each included website were entered into an online readability calculator. Five validated readability indices (Flesch-Kincaid Grade Level, Flesch Reading Ease Scale, Gunning Fog Index, Coleman-Liau Index, and Simple Measure of Gobbledygook (SMOG Index)) were used to evaluate each source. Websites were categorized by source (government, public and private). The availability of audiovisual accessibility features and content in non-English languages were assessed for each website. Of the 36 online resources analyzed, the median readability level was 9th-10th grade according to the Flesch-Kincaid Grade Level and college level, according to the Flesch Reading Ease Scale. The Gunning Fog Index and Coleman-Liau Index both showed median readability scores corresponding to a 12th grade reading level, whereas the SMOG Index showed a median score corresponding to that of the 9th grade. Only 10 websites (28%) offered information in languages other than English, and none provided comprehensive accessibility features for users with disabilities. Common online educational materials for patients with HF are characterized by higher readability levels than those recommended by the National Institutes of Health and the American Medical Association, and there were limited multilingual and accessibility options, potentially limiting the accessibility of resources to patients and caregivers.
RESUMO
Financial considerations continue to impact access to heart transplantation. Transplant recipients face various costs, including, but not limited to, the index hospitalization, immunosuppressive medications, and lodging and travel to appointments. In this study, we sought to describe the state of crowdfunding for individuals being evaluated for heart transplantation. Using the search term heart transplant, 1000 GoFundMe campaigns were reviewed. After exclusions, 634 (63.4%) campaigns were included. Most campaigns were in support of white individuals (57.8%), males (63.1%) and adults (76.7%). Approximately 15% of campaigns had not raised any funds. The remaining campaigns fundraised a median of $53.24 dollars per day. Of the patients, 44% were admitted at the time of the fundraising. Within the campaigns in the United States, the greatest proportions were in the Southeast United States in non-Medicaid expansion states. These findings highlight the significant financial toxicities associated with heart transplantation and the need for advocacy at the governmental and payer levels to improve equitable access and coverage for all.