Symptomatology of MS: results from the German MS Registry

Stuke, Kristin; Flachenecker, Peter; Zettl, Uwe K.; Elias, W.; Freidel, M; Haas, Judith; Pitschnau-Michel, Dorothea; Schimrigk, Sebastian; Rieckmann, Peter

doi:10.1007/s00415-009-5257-5

Cited by 93 publications

(66 citation statements)

References 9 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This data set was based on the minimal data set of the German MS register, which has been run by the German MS society (DMSG Bundesverband e.V.) since 2001 [5][6][7]16], and was modified due to the suggestions of SAC members. In addition, the socioeconomic aspects and the EQ5d were derived from several well-designed cost-of-illness-studies [9,10].…”

Section: Methodsmentioning

confidence: 99%

Development and pilot phase of a European MS register

et al. 2010

Self Cite

View full text Add to dashboard Cite

The MS-ID (Multiple Sclerosis Information Dividend) project was initiated by the European Multiple Sclerosis Platform (EMSP) in 2007 in order to identify and address major inequalities of MS treatment and care and thus eliminate disparities across the EU. One major approach to reach these goals in the longer term is the implementation of a European MS register for MS. The feasibility of an EU MS register was piloted among five countries (Germany, Iceland, Poland, Romania and Spain). Each country liaised with one documentation centre. Countries and test centres were both chosen in a way that a heterogeneous health care structure was provided. After reaching consensus about the data set, comprehension and acceptability of the two questionnaires-representing both the physician's and the patient's perspective-were tested with 20 MS patients in each country. In a 6-month data collection period, data from 547 patients were recorded. Most sections of the questionnaires were available for more than 90% of patients. The results obtained from the pilot phase of the European MS register indicate that it is feasible to collect standardized data across Europe. Thus, the European MS register may be a valuable instrument to compare treatment and care of MS across countries, estimate the cost of MS in Europe and monitor the implementation of and adherence to guidelines. It may help to reduce the disparities in MS care and treatment throughout Europe and eventually improve the quality of life of people with MS.

show abstract

Section: Methodsmentioning

confidence: 99%

Development and pilot phase of a European MS register

et al. 2010

Self Cite

View full text Add to dashboard Cite

show abstract

“…15 It remains difficult to conduct adequate needs assessment, as there is still no single, unambiguous, clear definition for the term 'severe MS.' 16 The most commonly used instrument to evaluate the severity of affectedness, the EDSS (Expanded Disease Status Scale), 17 assesses patients' functional status, referring primarily to restriction of movement, not other symptoms relevant for the severity of MS (e.g., fatigue, depression, pain, visual dysfunction). 18,19 Patients' own subjective definitions of being severely affected fit with the palliative approach, where intervention is guided by the subjective assessment of suffering. 16,20 Our study addresses this by exploring the unmet needs of MS patients in Germany who reported feeling severely affected.…”

mentioning

confidence: 99%

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

Galushko

Golla²,

Strupp³

et al. 2014

Journal of Palliative Medicine

View full text Add to dashboard Cite

Background: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. Objective: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. Methods: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients selfreporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were identified in the main categories ''support of family and friends,'' ''health care services,'' ''managing everyday life,'' and ''maintaining biographical continuity.'' Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. Conclusions: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professionalpatient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.

show abstract

“…Problems with urination are common among people with MS [36,37], and it is wellknown that this has a great impact on quality of life and participation and are associated with mood disorders and fatigue [38,39].…”

Section: Discussionmentioning

confidence: 99%

The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference

et al. 2011

View full text Add to dashboard Cite

To report on the results of an evidence-based International Consensus Conference to develop the Comprehensive and Brief ICF Core Set for MS. A formal and iterative decision-making and consensus process was undertaken, involving the integration of evidence from preparatory studies (expert survey, systematic literature review, qualitative study, empirical cross-sectional study) and expert opinion. The decision-making and consensus process included discussions and voting in working groups and plenary sessions involving selected international experts from different health professions. Twenty-one experts from 16 countries selected 138 ICF categories for the Comprehensive ICF Core for MS (40 Body functions, 7 Body structures, 53 Activities and Participation categories and 38 Environmental factors) and 19 categories for the Brief ICF Core Set for MS (8 Body functions, 2 Body structures, 5 Activities and Participation categories, 4 Environmental factors). An evidence-based and formal decision-making consensus process led to the approval of ICF Core Sets for MS which should be further validated.

show abstract

Symptomatology of MS: results from the German MS Registry

Cited by 93 publications

References 9 publications

Development and pilot phase of a European MS register

Development and pilot phase of a European MS register

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference

Contact Info

Product

Resources

About