Dataset Information

The Communication of Multiple Sclerosis Diagnosis: The Patients' Perspective.

ABSTRACT: Background. Multiple sclerosis (MS) is the leading cause of nontraumatic neurological disability in young adults in Europe and in the United States. The uncertainty regarding its evolution makes the diagnosis disclosure a difficult process. Objective. The aim of the study was to provide patients' global perspective towards MS diagnosis communication. Methods. 150 consecutive patients, recently diagnosed with CIS or MS, were asked to complete a 17-item questionnaire assessing factors influencing their satisfaction with the information provided. Results. Eighty-six patients fulfilled diagnostic criteria for MS and 64 for CIS. Diagnosis disclosure took place in a private setting and required in most cases (87.3%) less than 30 minutes. Most patients reported being moderately or highly satisfied with the information provided (75%). The degree of satisfaction seems significantly related to patients' younger age, a longer time dedicated to disclose the diagnosis, a CIS diagnosis, and, above all, tailored information and an adequate emotional support. Conclusion. Most patients reported a good degree of satisfaction about the communication of MS or CIS diagnosis. A fruitful relationship between patient and neurologist is essential to obtain a better acceptance of the disease, patients' compliance with chronic treatments and to improve patients' quality of life.

SUBMITTER: Messina MJ

PROVIDER: S-EPMC4693007 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

The Communication of Multiple Sclerosis Diagnosis: The Patients' Perspective.

Messina Maria Josè MJ Dalla Costa Gloria G Rodegher Mariaemma M Moiola Lucia L Colombo Bruno B Comi Giancarlo G Martinelli Vittorio V

Multiple sclerosis international 20151215

Background. Multiple sclerosis (MS) is the leading cause of nontraumatic neurological disability in young adults in Europe and in the United States. The uncertainty regarding its evolution makes the diagnosis disclosure a difficult process. Objective. The aim of the study was to provide patients' global perspective towards MS diagnosis communication. Methods. 150 consecutive patients, recently diagnosed with CIS or MS, were asked to complete a 17-item questionnaire assessing factors influencing ...[more]

PMID: 26788369

Similar Datasets

Project description:Among people with multiple sclerosis, cognitive impairment occurs commonly and is a potent predictor of disability. Some multiple sclerosis patients present with severe cognitive impairment, and distinguishing multiple sclerosis-related cognitive impairment from co-existent progressive neurodegenerative diseases such as Alzheimer disease poses a diagnostic challenge. The use of biomarkers such as PET and CSF proteins may facilitate this distinction. The study was a retrospective, descriptive study on convenience samples of separate cohorts, one of cognitively impaired multiple sclerosis patients evaluated on autopsy to demonstrate coincidence of both multiple sclerosis and neurodegenerative cognitive diseases. The second cohort were cognitively impaired multiple sclerosis patients evaluated by biomarker to investigate possible additional neurodegenerative cognitive disorders contributing to the cognitive impairment. We investigated selected biomarkers among 31 severely impaired patients (biomarker cohort) and 12 severely impaired patients assessed at autopsy and selected 24 (23 biomarker cohort, 1 autopsy cohort) had comprehensive neurocognitive testing. Biomarker cohort investigations included 18F-Fluorodeoxyglucose PET and/or CSF amyloid Aβ1-42, phospho-tau and total tau levels. The autopsy cohort was evaluated with comprehensive neuropathological assessment for aetiology of cognitive impairment. The cohorts shared similar sex, age at multiple sclerosis onset and multiple sclerosis clinical course. The autopsy-cohort patients were older at diagnosis (69.5 versus 57 years, P = 0.006), had longer disease duration [median (range) 20 years (3-59) versus 9 (1-32), P = 0.001] and had more impaired bedside mental status scores at last follow-up [Kokmen median (range) 23 (1-38) versus 31 (9-34) P = 0.01]. Autopsy-cohort patients confirmed, or excluded, coexistent neurogenerative disease by neuropathology gold standard. Most biomarker-cohort patients had informative results evaluating coexistent neurogenerative disease. Biomarkers may be useful in indicating a coexistent neurodegenerative disease earlier, and in life, in patients with multiple sclerosis and significant cognitive impairment.

Project description:OBJECTIVE:Biomarkers aid diagnosis, allow inexpensive screening of therapies, and guide selection of patient-specific therapeutic regimens in most internal medicine disciplines. In contrast, neurology lacks validated measurements of the physiological status, or dysfunction(s) of cells of the central nervous system (CNS). Accordingly, patients with chronic neurological diseases are often treated with a single disease-modifying therapy without understanding patient-specific drivers of disability. Therefore, using multiple sclerosis (MS) as an example of a complex polygenic neurological disease, we sought to determine whether cerebrospinal fluid (CSF) biomarkers are intraindividually stable, cell type-, disease- and/or process-specific, and responsive to therapeutic intervention. METHODS:We used statistical learning in a modeling cohort (n = 225) to develop diagnostic classifiers from DNA-aptamer-based measurements of 1,128 CSF proteins. An independent validation cohort (n = 85) assessed the reliability of derived classifiers. The biological interpretation resulted from in vitro modeling of primary or stem cell-derived human CNS cells and cell lines. RESULTS:The classifier that differentiates MS from CNS diseases that mimic MS clinically, pathophysiologically, and on imaging achieved a validated area under the receiver operating characteristic curve (AUROC) of 0.98, whereas the classifier that differentiates relapsing-remitting from progressive MS achieved a validated AUROC of 0.91. No classifiers could differentiate primary progressive from secondary progressive MS better than random guessing. Treatment-induced changes in biomarkers greatly exceeded intraindividual and technical variabilities of the assay. INTERPRETATION:CNS biological processes reflected by CSF biomarkers are robust, stable, disease specific, or even disease stage specific. This opens opportunities for broad utilization of CSF biomarkers in drug development and precision medicine for CNS disorders. Ann Neurol 2017;82:795-812.

Dataset Information

The Communication of Multiple Sclerosis Diagnosis: The Patients' Perspective.

Publications

The Communication of Multiple Sclerosis Diagnosis: The Patients' Perspective.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets