Evidence map›Paper›PMID 39449826›Full record

ArticleJournal of central nervous system disease2024

Best supportive care for patients with primary progressive multiple sclerosis (PPMS) in Germany prior to ocrelizumab treatment: Final results from the RETRO PPMS study.

Herbert Schreiber, Iris-Katharina Penner, Tanja Maier, Stefanie Hieke-Schulz, Jost Leemhuis, Tjalf Ziemssen

Abstract read
In one paragraph

Article in Journal of central nervous system disease, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Herbert SchreiberNeurological Practice Center, Neuropoint Academy & NTD, Ulm, Germany.
Iris-Katharina PennerDepartment of Neurology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
Tanja MaierRoche Pharma AG, Grenzach-Wyhlen, Germany.
Stefanie Hieke-SchulzRoche Pharma AG, Grenzach-Wyhlen, Germany.
Jost LeemhuisRoche Pharma AG, Grenzach-Wyhlen, Germany.
Tjalf ZiemssenCenter of Clinical Neuroscience, Neurological University Clinic Carl Gustav Carus, Technical University of Dresden, Dresden, Germany.ORCID https://orcid.org/0000-0001-8799-8202

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Best supportive care (BSC) measures are an essential component for the management of primary progressive multiple sclerosis (PPMS). Objectives: RETRO PPMS (ML39631) is the first study to systematically analyze the therapeutic journey and standard of BSC of patients with PPMS in Germany. Design: This multicenter, non-interventional study retrospectively analyzed patient charts. Methods: Data were recorded up until the first infusion of ocrelizumab (July 2018 to October 2021). Medical history, disease status, disease activity and treatments were assessed from 12 months before PPMS diagnosis until study start. Acute interventions, BSC parameters and rehabilitation measures from the past 27 months were assessed. Results: The core analysis population (N = 462) had a mean age (range) of 57.4 (27-85) years and mean disease duration of 13.7 (0.3-55.2) years. The most frequently reported symptoms were muscle spasticity, bladder disorder, ataxia, gait disturbance and fatigue. The most commonly used treatment was physical/occupational therapy (66.5% of patients); 47.2% received off-label treatment with corticosteroids/disease-modifying therapies. BSC measures for many symptoms were strikingly rare - especially for fatigue and cognitive impairment. Conclusion: This analysis uncovers severe BSC deficits for many debilitating PPMS symptoms. There is still a large unmet need for innovative multidisciplinary care concepts and improvements in neurological primary and secondary care.

Indexed as

best supportive careoff-label treatmentPrimary progressive multiple sclerosisreal-world dataretrospectivesymptomatic therapy

Identifiers

PMID39449826
PMCPMC11500219

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.