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BACKGROUND: The internet is a source of knowledge and medium widely used in services that facilitate access to information and networking. Multiple sclerosis (MS) patients find the possibility of acquiring information relating to their condition particularly rewarding. OBJECTIVE: We aimed to identify Polish MS patients' preferences by analyzing a percentage of internet users and determining the most common search subjects and patients' approach to information on the internet. Disability connected with the condition, its duration, and other factors that influence patients' internet use were examined along with instances of relations established through the internet and their durability. METHODS: The study examined 1045 patients (731 women, 314 men) treated in 10 Polish MS centers, of whom 932 (89.19%) declared to be internet users. Their average age was 40.65 (SD 11.06) and average MS duration was 9.08 (SD 6.97) years. The study used a proprietary survey on information seeking, the range of searched subjects, and internet usage frequency. RESULTS: The majority of the patients (494/932, 53.0%) used the internet 6-7 times per week and 4.3% (40/932) declared they spent minimum 2 hours per day. The most commonly searched subjects were world news (604/932, 72.9% of patients using the internet); 60.8% (504/932) searched for information on their condition, particularly for new treatment methods (562/932, 67.8%) and the course of illness (520/932, 62.7%). One's sex had no impact on internet usage (female vs male, odds ratio [OR] 1.13, 95% CI 0.72-1.77), although a patient's age might, at varying degrees. We found several significant associations using a .05 significance level: a patient with higher education used the internet 9 times more often than one with primary education (OR 8.64, 95% CI 3.31-22.57); lasting relationships increased chances of internet usage by 10-fold compared to widowers (OR 0.12, 95% CI 0.05-0.31); living in a city with a population over 100,000 increased chances by nearly 6 times compared with the countryside (OR 5.59, 95% CI 2.72-11.48); the relapsing-remitting MS type saw a 2-fold increase compared with the primary progressive MS type (OR 0.47, 95% CI 0.29-0.75); and those needing assistance were 2 times less likely to use the internet than patients who could move independently (OR 0.53, 95% CI 0.31-0.89). More than half of the patients (489/932, 52.5%) did not discuss the information found on the internet with their neurologists; 15.9% (148/932) believed that relationships established through the internet can be stable. CONCLUSIONS: The majority of Polish patients use the internet as a crucial information source on their condition and innovative treatment methods. The internet can be helpful in establishing new relationships, which are usually short-lived. Polish patients do not frequently discuss the information gathered on the internet with their doctors.
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INTRODUCTION: Adherence to treatment, including early treatment discontinuation, in patients with multiple sclerosis or clinically isolated syndrome can be affected by: treatment tolerability, route of drug administration, patient age, disease duration, comorbidities, medical care, and support from their caregivers. AIM: This study aimed to identify the risk factors for poor adherence to Betaferon® treatment, including early discontinuation and omitting doses. MATERIALS AND METHODS: 852 adult patients treated with Betaferon participated in this 24-month study. All patients were interviewed using the Risk of Drop-out Questionnaire, the Center for Epidemiologic Studies Depression Scale and the Kurtzke Expanded Disability Status Scale. RESULTS: Patients who stopped therapy were younger (p = 0.003) had a higher mean EDSS score (p = 0.022), higher mean number of relapses (p = 0.017), and reported more often fear of injection (p = 0.027) and adverse events (p = 0.007) than those who did not stop treatment. Comparing patients who stopped therapy in the first and the second year, patients who stopped therapy in the first year of treatment more frequently reported flu-like symptoms and fever, and those who stopped therapy in the second year reported-ineffectiveness of treatment and disease progression. Multivariable logistic regression models confirmed that young age, short disease duration, advanced and progressing disease, and poor Betaferon tolerability were related to premature treatment discontinuation. The risk of omitting a dose during therapy was increased in patients who were working or studying, who had more advanced disease or more adverse events, and in patients who received less support from their caregivers. CONCLUSIONS: Several reasons may lead to problems with adherence to Betaferon treatment. Patients at higher risk of discontinuing treatment need to be identified early to make caregivers' support available to them.
