Semantic analysis of social media messages of patients with neovascular age-related macular degeneration and diabetic macular edema by open Internet sources — a study of patients' opinions in real clinical practice

Purpose: to analyze social media messages of patients with neovascular age-related macular degeneration (nAMD) and diabetic retinopathy (DR), or their careers in order to investigates the patients’ opinion in the condition of real clinical routine. Material and methods. Real-life anonymized stories of patients from Russian-language open Internet sources (forums, social networks in Russia) were processed by artificial intelligence techniques: the technologies of automated analysis of unstructured natural language texts, including semantic technologies. In these messages, patients and their careers (mainly, family members) openly and in an ‘uncensored’ way share their experience in diagnostics and treatment while looking for a second opinion or supporting each other. They use general social networks as well as specific disease-related forums or Q&A portals. We identified 73 098 DR/nAMD-related posts, including 13 138 posts by 844 DR patients and 358 posts by 212 nAMD patients. The posts were analyzed in several steps with the technologies of automated analysis of unstructured natural language texts including semantic technologies aimed at processing large volumes of data. The semantic analysis of texts dealt with the whole meaning rather than individual keywords. Results . We obtained information on the patients’ characteristics and treatment plans of retinal diseases in real practice but also on the patients’ attitude to their condition, diagnostic and curative procedures, their needs and difficulties experienced during treatment. The nAMD and DR patients have a low level of Internet activity and poor awareness of these diseases as compared with the patients suffering from non-ophthalmological diseases with lower prevalence (breast cancer, multiple sclerosis, etc.) or other ophthalmological disorders. Most of the content for DR was produced by the patients’ relatives (82.6 % of messages), and for nAMD — by the patients themselves (65 %). The key item for DR patients was diabetic microvascular manifestations (over 42 000 posts discussed ‘diabetic foot’ and only 681 ‘diabetic retinopathy’). Quality of life (QoL) was shown to be significantly affected with inability to work as a major burden for 30 % of nAMD patients, and diabetes-associated comorbidities as a key factor compromising QoL in 20 % of DR patients. In nAMD patients, the average time-to-diagnosis after disease manifestation was 1 year (35 % patients reported 1–2 months), in DR, over a half of the m