A comprehensive assessment of patient experience and disease-related awareness in multiple sclerosis: A questionnaire-based nation-wide survey in Turkey.

BACKGROUND: Comprehensive assessment of multiple sclerosis (MS) patients in terms of patient profile, clinical and disease-related factors has great epidemiological value. This study aimed to evaluate patient experience and disease-related awareness in MS patients through a nation-wide survey in Turkey Methods: A total of 1379 MS patients participated in this cross-sectional questionnaire survey conducted between November 2018 and December 2018. The online questionnaire form included items on sociodemographic, disease-related, first-admission, treatment and follow up characteristics as well as the disability status. RESULTS: Patients were diagnosed at median 28.0 years of age, while the average time from admission to diagnosis and time from diagnosis to treatment were 1.2 years and 2.5 months, respectively. Neurology (45.4%) and ophthalmology (23.3%) were the most common clinics for the first admission, while numbness-weakness in lower and upper extremities (37.6%) and double vision-visual problems (30.6%) were the most common symptoms on initial admission. Treatment was initiated after the diagnosis in 1213(88.0%) patients, while 166 (12.0%) patients were treatment-naïve. Treatment discontinuation, treatment switch and use of alternative treatment methods were reported by 31.3%, 49.3% and 22.8% of patients, respectively. The ophthalmology admissions (with double vision or visual problems) were associated with the shortest time from presentation to diagnosis as compared with neurosurgery and internal medicine admissions (median 1.0 vs. 3.0 and 4.0 months, p<0.001). The neurology admissions (with numbness-weakness in extremities) were associated with more prompt (median 0.3 vs. 0.5 months, p=0.032) and more frequent onset of treatment after diagnosis (64.5% vs. 2.2% to 15.2%, p<0.001). Time from presentation to diagnosis was longer in patients aged >50 years (median 6.0 months vs. 2.0 months, p<0.001), in patients using alternative medicine (median 3.0 months vs. 1 month, p=0.001) and in patients admitted to a non-MS-center (median 3.0 months vs. 2.0 months, p=0.002). Median (min-max) age at diagnosis was significantly lower in patients with vs. without treatment discontinuation for any reason (26.0(10-56) vs. 29.0(3-60) years, p<0.001) and treatment switching (27.0(5-93) vs. 30.0(3-60) years, p<0.001). CONCLUSIONS: In conclusion, our findings revealed higher likelihood of earlier diagnosis and earlier treatment in patients admitted to an MS-center and in those presenting with ocular problems and sensory-motor deficits, respectively. Our findings also emphasize the association of older patient age with higher likelihood of diagnostic delay, and increased likelihood of treatment discontinuation for any reason and/or treatment switching in case of older patient age, younger age at diagnosis and diagnostic delay. In this regard, our findings highlight the need for improved awareness among patients as well as clinicians on initial manifestations of MS to enable admission or referral to an MS-center and to prevent delay in diagnosis, particularly for onset symptoms other than ocular or sensory-motor characteristics.

The First Cure Experience of A Clinic: Approach to The Patient to Start Ocrelizumab.

INTRODUCTION: Ocrelizumab is a newly introduced treatment in multiple sclerosis (MS). There is no data in the pivotal trials about in which extent liver function tests (LFTs) and lymphocyte count are affected before second-half dose of ocrelizumab and in which extent these results will prevent us giving the second-half dose. This study was designed for better understanding of the patient management and to support the data that showed no safety issues about ocrelizumab with real-life data. METHODS: The patients treated with ocrelizumab between May 20 and December 21, 2018 were retrospectively reviewed. Demographic and clinical data, side-effects due to ocrelizumab, laboratory results before and after the treatment were recorded. RESULTS: There were 30 (58.8%) females and 21 (41.2%) males. The mean age was 44.02±9.62 (24-65) years. Twenty-six (51%) of them were followed up with relapsing-remitting MS (RRMS), 18 (35.3%) with secondary progressive MS (SPMS) and 7 (13.7%) with primary progressive MS (PPMS). The mean lymphocyte value one day after the first half-dose was lower than the value before the treatment (p<0.001). The mean lymphocyte level one month after the second half-dose was higher than the value one day after the first half-dose (p=0.001), while it was still lower than the value before treatment (p=0.006). No changes were seen in LFTs. Mild infusion-related reactions were observed in 4 patients. CONCLUSION: From our data, it is evident that ocrelizumab is safe in the short term. Long-term real-life studies are needed to assess the safety of ocrelizumab in the long term.

The efficacy of rituximab in patients with neuromyelitis optica spectrum disorder: A real-world study from Turkey.

BACKGROUND: Neuromyelitis optica spectrum disorders (NMOSD) are a group of antibody-mediated chronic inflammatory diseases of the central nervous system. Rituximab is a monoclonal antibody that leads to a reduction in disease activity. OBJECTIVE: To evaluate the efficacy of rituximab as monotherapy in NMOSD and to determine whether the efficacy varies depending on the presence of antibodies in this cohort. METHOD: This multicentre national retrospective study included patients with NMOSD treated with rituximab at least for 12 months from Turkey. The primary outcomes were the change in the annualised relapse rate, the Expanded Disability Status Scale (EDSS), the number of relapse and radiological activity-free patients. RESULTS: A total of 85 patients with NMOSD were included in the study. Of 85 patients, 58 (68.2%) were seropositive for anti-Aquaporin4-IgG (antI-AQP4-IgG). All patients were Anti-Myelin Oligodendrocyte Glycoprotein IgG (anti-MOG-IgG) negative. The median follow-up for rituximab treatment was 21 months (Q1 16-Q3 34.5). During rituximab treatment, the mean annualised relapse rate (ARR) significantly decreased from 1.45 ± 1.53 to 0.15 ± 0.34 (P < .001). In subgroup analyses, the mean ARR decreased from 1.61 ± 1.65 to 0.20 ± 0.39 in the seropositive group and 1.10 ± 1.19 to 0.05 ± 0.13 in the seronegative group. The mean EDSS improved from 3.98 ± 2.04 (prior to treatment onset) to 2.71 ± 1.59 (at follow-up) (P < .001). In the seropositive group, mean EDSS decreased from 3.94 ± 1.98 to 2.67 ± 1.54, and in the seronegative group, mean EDSS decreased from 4.07 ± 2.21 to 2.79 ± 1.73. There was no significant difference between anti-AQP4-IgG (+) and (-) groups in terms of ARR and EDSS. Sixty-four patients (75.2%) were relapse-free after the initiation of treatment. Seventy patients (82.3%) were radiological activity-free in the optic nerve, area postrema and brainstem. Additionally, 78 patients (91.7%) showed no spinal cord involvement after the treatment. CONCLUSION: Rituximab therapy is efficacious in the treatment of Turkish NMOSD patients independent of the presence of the anti-AQP4-IgG antibody.

Validity and reliability of the Turkish version of the pressure ulcer prevention knowledge assessment instrument.

STUDY AIM: Sound knowledge of pressure ulcers is important to enable good prevention. There are limited instruments assessing pressure ulcer knowledge. The Pressure Ulcer Prevention Knowledge Assessment Instrument is among the scales of which psychometric properties have been studied rigorously and reflects the latest evidence. This study aimed to evaluate the validity and reliability of the Turkish version of the Pressure Ulcer Prevention Knowledge Assessment Instrument (PUPKAI-T), an instrument that assesses knowledge of pressure ulcer prevention by using multiple-choice questions. MATERIALS AND METHODS: Linguistic validity was verified through front-to-back translation. Psychometric properties of the instrument were studied on a sample of 150 nurses working in a tertiary hospital in Istanbul, Turkey. RESULTS: The content validity index of the translated instrument was 0.94, intra-class correlation coefficients were between 0.37 and 0.80, item difficulty indices were between 0.21 and 0.88, discrimination indices were 0.20-0.78, and the Kuder Richardson for the internal consistency was 0.803. CONCLUSIONS: The PUPKAI-T was found to be a valid and reliable tool to evaluate nurses' knowledge on pressure ulcer prevention. The PUPKAI-T may be a useful tool for determining educational needs of nurses on pressure ulcer prevention.