Clean intermittent catheterization in multiple sclerosis patients: An adherence and long-term follow-up study.

INTRODUCTION: Clean Intermittent Catheterization (CIC) is considered as a gold standard of treatment for bladder emptying disorders. A large amount of literature on CIC for patients suffering from neurological disorders is available, but there is a lack of research specifically concerning multiple sclerosis (MS) patients. Our primary outcome was to determine the characteristics of our population (sex, EDSS and age when CIC was introduced). Our secondary outcomes were to determine adherence of CIC. METHOD: As part of a multicenter, observational, retro-prospective study, data was collected from neuro-urologist consultation reports, and extracted from bladder diaries between 01/01/2000 and 31/03/24. MS patients, over 18 years, with the indication of CIC were included. RESULTS: 195 patients (72.3% women) were included, with a mean age of 49 years old. The median of follow-up was 9 years. Median EDSS at the start of the study was 5.5. There was an adherence rate of 65.1%. Urinary leakage was present in 74.2% of patients prior to CIC and 31.6% following CIC. CONCLUSION: Catheterization is mainly offered to patients with an EDSS between 0 and 7. Rate of adhesion is encouraging, with most patients still continuing to use CIC by the end of follow-up. During the follow-up, we observed a reduced leakage rate but CIC alone can not explain this improvement. Following studies should include a list of constraints and reasons of halted CIC.

French protocol for the diagnosis and management of hematopoietic stem cell transplantation in autoimmune diseases.

Hematopoietic stem cell transplantation (HSCT) for severe ADs was developed over the past 25years and is now validated by national and international medical societies for severe early systemic sclerosis (SSc) and relapsing-remitting multiple sclerosis (MS) and available as part of routine care in accredited center. HSCT is also recommended, with varying levels of evidence, as an alternative treatment for several ADs, when refractory to conventional therapy, including specific cases of connective tissue diseases or vasculitis, inflammatory neurological diseases, and more rarely severe refractory Crohn's disease. The aim of this document was to provide guidelines for the current indications, procedures and follow-up of HSCT in ADs. Patient safety considerations are central to guidance on patient selection and conditioning, always validated at the national MATHEC multidisciplinary team meeting (MDTM) based on recent (less than 3months) thorough patient evaluation. HSCT procedural aspects and follow-up are then carried out within appropriately experienced and Joint Accreditation Committee of International Society for Cellular Therapy and SFGM-TC accredited centres in close collaboration with the ADs specialist. These French recommendations were performed according to HAS/FAI2R standard operating procedures and coordinated by the Île-de-France MATHEC Reference Centre for Rare Systemic Autoimmune Diseases (CRMR MATHEC) within the Filière FAI2R and in association with the Filière MaRIH. The task force consisted of 3 patients and 64 clinical experts from various specialties and French centres. These data-derived and consensus-derived recommendations will help clinicians to propose HSCT for their severe ADs patients in an evidence-based way. These recommendations also give directions for future clinical research in this area. These recommendations will be updated according to newly emerging data. Of note, other cell therapies that have not yet been approved for clinical practice or are the subject of ongoing clinical research will not be addressed in this document.

[Multidisciplinary support is essential for the management of multiple sclerosis]. / Un accompagnement multidisciplinaire indispensable pour la prise en charge de la sclérose en plaques.

Multiple sclerosis (MS) is a chronic inflammatory pathology of the central nervous system, which affects young subjects. MS requires a multidisciplinary care coordinated between specialists and allied health professionals. A close collaboration is needed between the various praticians. The last decades have been marked by very significant progress, the diagnosis being established earlier and disease-modifying treatments introduced earlier, with the use of high-efficiency treatments. These therapeutic advances are exciting, however efforts are still needed to better understand the mechanisms of myelin repair and neurodegeneration.

[Role of the MS nurse specialist in the patient's care pathway]. / Rôle de l'infirmière spécialisée SEP dans le parcours de soins du patient.

The specialized nurse in MS is a new profession practiced in MS clinics and outpatients specialized coordination structures. She is part of a specialized multi-professional team. The nurse must master a broad knowledge of the disease and the treatments. Have skills in therapeutic education, communication and coordination. She has a detailed knowledge of the resources of the care offer. The MS nurse thus participates in the assessment of the patient's needs for the implementation of a personalized care plan combining response to medical, paramedical, psychological and social needs.

[Multidisciplinary and multimodal rehabilitation care for patients suffering from multiple sclerosis]. / Une prise en charge rééducative pluridisciplinaire et multimodale des patients souffrant de sclérose en plaques.

The support provided at the Germaine-Revel medical center in the Rhône region involves assessing the patient as a whole, which is a key aspect of implementing personalized rehabilitation focused on one or more objectives. The team offers multidisciplinary and multimodal care, because the clinical symptoms of people with multiple sclerosis are very varied: they can include neuromotor, neurosensory, neurosensory and cognitive disorders, as well as bladder and bowel and genital disorders.

[A listening and psychological support line for people with MS]. / Une ligne d'écoute et de soutien psychologique pour les personnes atteintes de SEP.

The French Multiple Sclerosis Association offers a psychological helpline for people with this disease, their families, friends and caregivers. Two clinical psychologists answer this toll-free number, which is accessible seven days a week at set times. They offer callers active listening and adapted support, particularly after the announcement of the medical diagnosis and/or in times of difficulty. The space thus created for discussion allows them to address emotional or personal aspects, material situations, as well as questions and problems associated with the experience of the disease.

A new tool to investigate anorectal disorders in patients with multiple sclerosis: STAR-Q.

BACKGROUND: Bowel symptoms are commonly experienced by patients with Multiple sclerosis (PwMS), but no specific questionnaire validated in this population allows a rigorous assessment. OBJECTIVE: Validation of a multidimensional questionnaire assessing bowel disorders in PwMS. METHODS: A prospective, multicenter study was conducted between April 2020 and April 2021. The STAR-Q (Symptoms' assessmenT of AnoRectal dysfunction Questionnaire), was built in 3 steps. First, literature review and qualitative interviews were performed to create the first version, discussed with a panel of experts. Then, a pilot study assessed comprehension, acceptation and pertinence of items. Finally, the validation study was designed to measure content validity, internal consistency reliability (alpha coefficient of Cronbach) and test-retest reliability [intraclass correlation coefficient (ICC)]. The primary outcome was good psychometric properties with Cronbach's α>0.7 and ICC>0.7. RESULTS: We included 231 PwMS. Comprehension, acceptation and pertinence were good. STAR-Q showed a very good internal consistency reliability (Cronbach's α=0.84) and test-retest reliability (ICC=0.89). Final version of STAR-Q was composed of 3 domains corresponding in symptoms (Q1-Q14), treatment and constraints (Q15-Q18) and impact on quality of life (Q19). Three categories of severity were determined (STAR-Q≤16: minor, between 17 and 20: moderate, and≥21: severe). CONCLUSIONS: STAR-Q presents very good psychometric properties and allows a multidimensional assessment of bowel disorders in PwMS.

A review on plant-based remedies for the treatment of multiple sclerosis.

Multiple sclerosis (MS) is a complex autoimmune disease of central nervous system, which is degenerative in nature usually appears between 20-40years of age. The exact cause of MS is still not clearly known. Loss of myelin sheath and axonal damage are the main features of MS that causes induction of inflammatory process and blocks free conduction of impulses. Till date FDA has approved 18 drugs to treat or modify MS symptoms. These medicines are disease-modifying in nature directed to prevent relapses or slow down the progression of disease. The use of the synthetic drug over an extended period causes undesirable effects that prompt us to look at Mother Nature. Complementary and alternative medicine involves the use of medicinal plants as an alternative to the existing modern medical treatment. However, modern drugs cannot be replaced completely with medicinal plants, but the two types of drugs can be used harmoniously with later one can be added as an adjuvant to the existing treatment. These medicinal plants have the potential to prevent progression and improve the symptoms of MS. Various plants such like Nigella sativa, ginger, saffron, pomegranate, curcumin, resveratrol, ginsenoside have been tested as therapeutics for many neurodegenerative diseases. The purpose of this write-up is to make information available about medicinal plants in their potential to treat or modify the symptoms of MS. Chronically ill patients tend to seek medicinal plants as they are easily available and there is a general perception about these medicines of having fewer undesirable effects.

Multiple sclerosis and glatiramer acetate: Risk factors for central retinal vein occlusion?

Multiple sclerosis may present an increased risk for venous thromboembolism. Ophthalmological symptoms include loss of vision, visual field loss, changes in color vision, diplopia and nystagmus. First-line treatments for multiple sclerosis are beta-interferon, glatiramer acetate, dimethyl fumarate and teriflunomide. To the best of our knowledge, no ophthalmologic side effects have been reported with glatiramer acetate. We present a woman with multiple sclerosis on glatiramer acetate therapy with a central retinal vein occlusion in the absence of other risk factors.

Effects of socioeconomic status on excess mortality in patients with multiple sclerosis in France: A retrospective observational cohort study.

Background: The effects of socio-economic status on mortality in patients with multiple sclerosis is not well known. The objective was to examine mortality due to multiple sclerosis according to socio-economic status. Methods: A retrospective observational cohort design was used with recruitment from 18 French multiple sclerosis expert centers participating in the Observatoire Français de la Sclérose en Plaques. All patients lived in metropolitan France and had a definite or probable diagnosis of multiple sclerosis according to either Poser or McDonald criteria with an onset of disease between 1960 and 2015. Initial phenotype was either relapsing-onset or primary progressive onset. Vital status was updated on January 1st 2016. Socio-economic status was measured by an ecological index, the European Deprivation Index and was attributed to each patient according to their home address. Excess death rates were studied according to socio-economic status using additive excess hazard models with multidimensional penalised splines. The initial hypothesis was a potential socio-economic gradient in excess mortality. Findings: A total of 34,169 multiple sclerosis patients were included (88% relapsing onset (n = 30,083), 12% progressive onset (n = 4086)), female/male sex ratio 2.7 for relapsing-onset and 1.3 for progressive-onset). Mean age at disease onset was 31.6 (SD = 9.8) for relapsing-onset and 42.7 (SD = 10.8) for progressive-onset. At the end of follow-up, 1849 patients had died (4.4% for relapsing-onset (n = 1311) and 13.2% for progressive-onset (n = 538)). A socio-economic gradient was found for relapsing-onset patients; more deprived patients had a greater excess death rate. At thirty years of disease duration and a year of onset of symptoms of 1980, survival probability difference (or deprivation gap) between less deprived relapsing-onset patients (EDI = -6) and more deprived relapsing-onset patients (EDI = 12) was 16.6% (95% confidence interval (CI) [10.3%-22.9%]) for men and 12.3% (95%CI [7.6%-17.0%]) for women. No clear socio-economic mortality gradient was found in progressive-onset patients. Interpretation: Socio-economic status was associated with mortality due to multiple sclerosis in relapsing-onset patients. Improvements in overall care of more socio-economically deprived patients with multiple sclerosis could help reduce these socio-economic inequalities in multiple sclerosis-related mortality. Funding: This study was funded by the ARSEP foundation "Fondation pour l'aide à la recherche sur la Sclérose en Plaques" (Grant Reference Number 1122). Data collection has been supported by a grant provided by the French State and handled by the "Agence Nationale de la Recherche," within the framework of the "Investments for the Future" programme, under the reference ANR-10-COHO-002, Observatoire Français de la Sclérose en Plaques (OFSEP).

[Leber hereditary optic neuropathy: differential diagnosis]. / Neuropathie optique héréditaire de Leber : le diagnostic différentiel.

The diagnosis of Leber hereditary optic neuropathy is suspected in the siblings of an affected person that complains of a decrease in visual acuity. It can also be suspected in a young subject, especially a male, with no medical history that presents with an optic neuropathy. Leber hereditary optic neuropathy is a diagnosis of exclusion. The search for differential diagnoses is essential in all cases, even when a mutation of the mitochondrial DNA was found in the patient of in a healthy carrier maternal relative. This is the interest of multimodal imaging and electrophysiology that allow to exclude retinal pathology mimicking optic neuropathy. A neuroradiological assessment must be systematically prescribed to eliminate a compressive lesion and/or intracranial hypertension. This assessment also provides information on a possible hypersignal of the optic nerve, the appearance of which can be an argument for orientation towards different causes of optic neuritis. Finally, a deficiency or toxic cause must be ruled out.

miR-181a-5p is a potential candidate epigenetic biomarker in multiple sclerosis.

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system (CNS) characterized by demyelination and axonal degeneration. Abnormal expression of microRNAs (miRNAs) plays an important role in MS pathology. In this cohort study, differential expression of the four miRNAs (hsa-miR-155-5p, hsa-miR-9-5p, hsa-miR-181a-5p, and hsa-miR-125b-5p) was investigated in 69 individuals, including 39 MS patients (relapsing-remitting MS (RRMS), n = 27; secondary progressive MS (SPMS), n = 12) and 30 healthy controls. In silico analyses revealed possible genes and pathways specific to miRNAs. Peripheral blood miRNA expressions were detected by quantitative real-time PCR (qPCR). hsa-miR-181a-5p was downregulated and associated with increased MS risk (P = 0.012). The other three miRNAs were upregulated and not associated with MS (P < 0.05). The area under the curve (AUC) is 0.779. In silico analyses showed that hsa-miR-181a-5p may participate in MS pathology by targeting MAP2K1, CREB1, ATXN1, and ATXN3 genes in inflammation and neurodegeneration pathways. The circulatory hsa-miR-181a-5p can regulate target genes, reversing the mechanisms involved in MS pathologies such as protein uptake and processing, cell proliferation and survival, inflammation, and neurodegeneration. Thus, this miRNA could be used as an epigenomic-guided diagnostic tool and for therapeutic purpose.

Impact on quality of life in multiple sclerosis patients: Which urinary symptoms are to blame?

AIM: To evaluate the correlation between the Expanded Disability Status Scale (EDSS) in multiple sclerosis (MS) subjects, and the severity of lower urinary tract symptoms (LUTS), the bother caused by these symptoms and subjects' quality of life (QoL). MATERIAL AND METHODS: This cross-sectional study included 50 subjects with persistent LUTS secondary to MS who were recruited from the registry of a national NGO, between October 2017 and November 2019. Subjects with a history of any disease besides MS that could otherwise explain the presence of LUTS, as well as those with other neurological conditions were excluded. Information including MS duration, subjects' EDSS, voiding and storage LUTS, voiding symptoms' subscore of the International Prostate Symptom Score (IPSS-V), Overactive Bladder Symptom Scores (OABSS), Urinary Bothersome Questionnaire in Multiple Sclerosis (UBQMS), and urologic QoL (SF-Qualiveen) was gathered. Correlations between these scores were assessed using Spearman's bivariate correlations. Wilcoxon's signed rank test was used to evaluate the difference of impact between voiding and storage LUTS on bother of subjects. RESULTS: The median disease duration was 7±5.8years and the predominant lower urinary symptom was urgency (82%). Median OABSS and IPSS-V were respectively 8±3.8 and 8±3. Subjects were significantly more bothered from storage than voiding symptoms (2 vs. 1.6; P=0.03), and their QoL was directly affected by storage LUTS. Urgency urinary incontinence had the highest positive correlation with SFQ (r=0.542; P<0.01). MS duration and urologic QoL measured by SF-Q were negatively correlated (r=-0.345; P=0.01). CONCLUSION: In MS patients with LUTS, urologic QoL is mainly affected by storage urinary symptoms. Physicians should use a holistic approach to reduce the risk of complications in these patients, by controlling both voiding and storage symptoms, in particular urgency urinary incontinence that mostly affects patient's QoL.

[Multiple sclerosis and daily care]. / Sclérose en plaques et soins au quotidien.

Multiple sclerosis is a progressive disease that is too often associated with the image of a wheelchair. However, this image does not reflect the reality of most patients. Even with basic treatment, relapses can persist. Less visible, fluctuating and often misunderstood symptoms can be the source of negative judgements: chronic fatigue labelled as laziness or as a lack of willpower, balance problems interpreted as drunkenness, mood fluctuations likened to hysteria, etc. The consequences of the disease are therefore physical, psychological and socio-economic. The aim is to preserve the quality of daily life. There are a number of aids and treatments available.

[Supporting the adaptation to the announcement of a diagnosis of multiple sclerosis (2/2)]. / Accompagner l'adaptation à l'annonce d'une sclérose en plaques (2/2).

The emotional reactions that arise when a diagnosis of multiple sclerosis is made are repeated at each stage of the pathology. They confront the person with a reality they thought they had mastered. Fighting with the disease means continuing to live one's personal, family, love and professional life. It is a matter of positive thinking by becoming aware of one's limits and finding the right balance between one's desires and one's capacities. The relationship of trust developed with the various professionals who will accompany the patient throughout his or her treatment is essential.

[Supporting the adaptation to the announcement of multiple sclerosis]. / Accompagner l'adaptation à l'annonce d'une sclérose en plaques (1/2).

Multiple sclerosis (MS) is a disease that most often begins in young adulthood. With at least 2,500 new cases diagnosed each year in France, it is the leading cause of severe non-traumatic disability among young adults. The announcement of MS constitutes a brutal intrusion into the life of the subject. The carers accompany the process of cognitive and emotional adjustment that is inevitable in order to learn to live with the disease.

Prevalence of comorbidities in multiple sclerosis patients with neurogenic bladder.

AIMS: The aim of this study was to define the prevalence of comorbidities among multiple sclerosis patients with lower urinary tract symptoms. METHODS: A retrospective study of data collected prospectively from January 2000 to March 2016 was carried out using a database. Comorbidities were divided into several classes according to the International Classification of Diseases (ICD-10). RESULTS: One hundred and fifty-five patients were included. All had a neurogenic bladder with 150 (96%) overactive bladder. EDSS score was≥6 in 44 patients (28%). Comorbidities were present in 79 (50,9%) and the most frequent ones were cardiovascular (14,2%), endocrinological (10,3%), urological (8,4%), abdominal (7,7%). Overweight (BMI≥25) was observed in 63 (40%). A strict relationship was found for BMI and stress urinary incontinence (P<0.001) as well as voiding dysfunction (P=0.003) without significant association for BMI and overactive bladder. CONCLUSION: Prevalence of comorbidities is important in MS (more than 50%). A significant association is found between overweight, stress urinary incontinence and voiding dysfunction. Knowledge of these comorbidities in MS is important since the presence of these urinary symptoms not related to neurogenic bladder must lead to a specific treatment. LEVEL OF EVIDENCE: 3.

[Multiple sclerosis and intermittent self-catheterization]. / Sclérose en plaques et autosondage intermittent.

INTRODUCTION: Lower urinary tract dysfunctions are frequent in patients with multiple sclerosis (MS). These disorders impair quality of life and can cause urological complications. In cases of urinary retention or incomplete bladder emptying, clean intermittent self-catheterization is the preferred option where possible. OBJECTIVE: To identify data concerning the use of intermittent self-catheterization by patients with MS. BIBLIOGRAPHIC SOURCE: A review was done using Medline/Pubmed with selection of articles in either English or French. The key words were: « multiple sclerosis and intermittent catheterization, self-catheterization, neuro-urology/urinary guidelines, continent stoma, continent vesicostomy¼. STUDY SELECTION: Studies were selected if they concerned either multiple sclerosis exclusively or with a majority of cases concerning MS. RESULTS: Intermittent self-catheterization is recommended and commonly used in patients with MS. Studies are rare in this specific population. Questions still remain about indications and practicalities in this disease. Indications must be individually evaluated according to symptoms and complications. The use of self-catheterization can improve symptomatology or quality of life, however, global urinary management is necessary. Urinary infection is the most frequently reported side effect. The teaching of self-catheterization should take into account physical and cognitive impairment. Due to the developing nature of the pathology, indications and the patients' ability to carry out self-catheterization should be regularly assessed. LIMITATIONS: The search was limited to a single bibliographic source and studies are rare. CONCLUSION: Further studies are necessary to increase knowledge of self-catheterization specificities in MS patients compared to other neurogenic patients.

Short-term reproducibility of cystometry in multiple sclerosis patients.

OBJECTIVE: To assess the reproducibility of detrusor activity cystometric pattern in multiple sclerosis (MS) patients, which is poorly documented in the medical literature, by means of successive filling. METHODS: We conducted a prospective study in MS patients; cystometry was repeated twice at 5minutes of interval if a detrusor overactivity before 300mL of filling was observed. Thus, 3 successive cystometries were analysed. The following characteristics were recorded: detrusor maximum pressure (Pmax), volume at the first involuntary detrusor contraction (IDC), maximum cystometric capacity (MCC), pressure at the first IDC, the existence of an overactive detrusor classified as phasic or terminal. RESULTS: We included 31 patients (19 women and 12 men); only 6 patients were naïve-treatment, the mean EDSS was: 5.3 (±1.6) and the mean age was 48.4 (±12.5) years. All the patients had an overactive detrusor for each cystometry. The reproducibility was good for all the parameters (range ICC between 0.7 and 0.83). CONCLUSION: Quantitative and qualitative cystometric data have a good reproducibility in MS patients with detrusor overactivity before 300mL of filling. LEVEL OF PROOF: 3.