Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review.

In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS

Rethinking MS in Europe: Prioritising Timely, Integrated Care for People with Multiple Sclerosis

Background: Multiple Sclerosis (MS) is a progressive neurological disease that can lead to severe disability. It is one of the most prevalent causes of disability in young adults in the world. Over 1,000,000 people are affected across Europe. Management strategies include DMTs, symptomatic treatment and lifestyle interventions-all of which must be tailored to the individual with MS in order to be effective. The European Brain Council initiated in 2018 a project RETHINKING MS, calling for change in MS care. Method: The study’s research included data mapping, expert interviews and national roundtable discussions utilising the care pathway concept and the result of the literature search. The care pathway implies an integrated care framework. A series of clinical and patient-oriented benchmarks along the care process were developed, focusing on multidisciplinary, timely integrated care as a key area which has been identified amongst the priorities for policy action to meet the needs of people living with MS. Results: Highlight three main gaps in the management of MS across Europe. Firstly, providing multidisciplinary care is organisationally challenging. Secondly, access to specialist MS roles and programmes is limited. Thirdly, there is a lack of suitable information for people with MS. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multidisciplinary MS Care Units where there is an adequate infrastructure to provide proper monitoring of patients, comprehensive assessment, and detection of side effects and ability to promptly address them. A multidisciplinary MS Care Unit approach can be defined as the presence of a group of different specialists, who work together and with the MS neurologists and nurses with a formalized diagnostic workup procedure, protocols for initiation and follow-up of DMTs and management of complications. Conclusion: Rethinking on how MS is managed in order to adequately provide care and support for all people with MS is needed. The RETHINKING MS in Europe report highlights that European and national policymakers should focus their efforts around these priorities and take specific actions. Similarly, the COVID-19 pandemic brings opportunities to re-think integrated care models across Europe

Assess, compare and enhance the <i>status</i> of persons with Multiple Sclerosis (MS) in Europe: a European Register for MS

Objectives – Persons with multiple sclerosis (PwMS) experience health-related quality of life (HRQoL) problems greatly differing across Europe, and the European Union (EU) faces deep inequalities in MS management from country to country. Through the establishment of a European MS Register (EUReMS), an effective action is proposed to improve the overall knowledge on MS and support effective intervention programmes at EU and national political level. EUReMS aims to achieve consensus on its mission and vision, to define existing data providers, to develop models driving future MS health policies and research, to develop an information technology (IT) infrastructure for a data set, to develop a European shared governance and to secure providers’ data provision into EUReMS. Materials and methods – EUReMS is meant to build on a minimum set of core data from existing national and regional population-based MS registries and from PwMS’ perspectives. EUReMS’ main partner is the European MS Platform (EMSP) acting in collaboration with associated and collaborating European partners. Results – EUReMS was launched in July 2011. A Consensus Statement on purposes, vision, mission and strategies was produced in December 2011, and a comprehensive survey on existing MS data collections in Europe has been performed, and the EUReMS data mask is currently being discussed. Conclusions – EUReMS will represent a tool to provide up to date, comparable and sustainable MS data through an effective and credible register, which will encourage extensive knowledge building of MS, more equitable policies and higher standards in MS treatment and services.</br

Multiple sclerosis registries in Europe - results of a systematic survey.

Background: Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data. Methods: National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries' leaders, followed by telephone interviews with them. Results: Twenty registries were identified, with 13 completing the questionnaire and seven being interviewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epidemiology (n=10), long-term therapy outcome (n=8), healthcare research (n=9) and support/basis for clinical trials (n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients' perspectives were only collected in six registries. Conclusions: The detailed information on a large number of national MS registries in Europe is a prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations