RESUMO
BACKGROUND: Noncommunicable disease (NCD)-related deaths account for 71% of deaths worldwide. The World Health Organization recently developed a global action plan to address the impact of NCDs, with the goal of reducing the number of premature NCD-related deaths to 25% by the year 2025. Appropriate therapeutic adherence is critical for effective disease management; however, approximately 30%-50% of patients with an NCD do not comply with disease management activities as prescribed. Web-based patient communities can represent platforms from which specific information on patients' perception of treatment adherence can be gathered outside of a clinical trial setting. OBJECTIVE: This study aims to better understand patients' perspectives regarding therapeutic adherence and iatrogenic risk in 2 major groups of NCDs for which poor disease management can have fatal consequences: cardiovascular diseases and mental disorders. Therapeutic adherence, motivational factors, patients' awareness and perception of iatrogenesis, and treatment tools used by patients were assessed. METHODS: A web-based survey was performed among patients with cardiovascular diseases or mental disorders or both conditions who were registered on the French Carenity platform, a web-based community in which patients with an NCD can share experiences and receive support and information. The study inclusion criteria were defined as follows: diagnosis of cardiovascular disease or mental disorder or both conditions (self-declared), age ≥18 years, residence in France, registration on the French Carenity platform, and ongoing pharmaceutical treatment for the condition. Patients who met the inclusion criteria were then invited to complete a self-administered web-based questionnaire that included questions addressing therapeutic adherence and iatrogenic risk. RESULTS: A total of 820 patients were enrolled in the study, including patients with cardiovascular diseases (403/820, 49.2%), patients with mental disorders (292/820, 35.6%), and patients with both cardiovascular diseases and mental disorders (125/820, 15.2%). The mean age of the participants was 55.2 (SD 12.7) years. We found that 82.8% (679/820) of patients experienced adverse effects of medication. Patients tended to perceive themselves to be more adherent than they actually were; a significant number of patients disregarded their prescription and stopped or interrupted medication without consulting with a doctor. Patients with cardiovascular diseases were nearly twice as adherent as patients with a mental disorder (P≤.001). Adherence was significantly associated with gender (P≤.001), age (P≤.001), and treatment complexity (P≤.001). Finally, for each disease type, 3 patient profiles were identified, which provide interesting insight for improving therapeutic adherence and adjustment strategies specifically according to patient behavior. CONCLUSIONS: This study provides insight into the perspectives of patients receiving therapy for cardiovascular diseases or mental disorders or both conditions, which could help improve the management of NCDs and prevent premature death. Our study also shows that web-based patient platforms provide new opportunities to improve disease management by understanding patients' experiences.
RESUMO
An international online patient community, Carenity, conducted a patient study in two independent waves among adults affected by non-communicable diseases (NCDs) in Europe and in the United States of America (USA). The study aimed to assess the real time impact of the coronavirus disease 2019 (COVID-19) on the medical conditions of patients with NCDs, their access to health care, and their adaptation to daily life as well as to describe their sources of information on COVID-19 and their needs for specific information and support. During the pandemic, 50% of the patients reported a worsening of their medical condition, and 17% developed a new disease. Additionally, 26% of the respondents reported an impact of the pandemic on regular/long-term treatment intake. 54% of the patients felt very or completely socially isolated and reported a strong impact of the COVID-19 pandemic on their stress level and state of mind, with higher levels observed in the USA compared to Europe. 59% of the respondents wished to have received additional information regarding the risks associated to their medical condition during the pandemic. Television was the most used source of information, whereas physicians were the most trusted one. This study describes the substantial impact of the COVID-19 pandemic on NCD patients.