Evidence map›Paper›PMID 40202598›Full record

ArticleJournal of neurology2025

Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients.

Audrey Iskandar, Maresa Buchholz, Iris Blotenberg, Tanja Schmitz-Hübsch, Jennifer Faber, Heike Jacobi, Feng Xie, Marcus Grobe-Einsler, Thomas Klockgether, Bernhard Michalowsky and 1 more

Abstract read
In one paragraph

Article in Journal of neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–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

3 citing papers in PubMed.

  1. Article
  2. Review
  3. 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

11 authors.

Audrey IskandarGerman Center for Neurodegenerative Diseases (DZNE), Site Rostock/Greifswald, Patient-Reported Outcomes & Health Economics Group, Ellernholzstrasse 1-2, 17489, Greifswald, Germany. audrey.iskandar@dzne.de.ORCID http://orcid.org/0009-0007-6400-507X
Maresa BuchholzGerman Center for Neurodegenerative Diseases (DZNE), Site Rostock/Greifswald, Patient-Reported Outcomes & Health Economics Group, Ellernholzstrasse 1-2, 17489, Greifswald, Germany.
Iris BlotenbergGerman Center for Neurodegenerative Diseases (DZNE), Site Rostock/Greifswald, Patient-Reported Outcomes & Health Economics Group, Ellernholzstrasse 1-2, 17489, Greifswald, Germany.
Tanja Schmitz-HübschExperimental and Clinical Research Center, A cooperation of Max-Delbrueck Center of Molecular Medicine and Charité, Universitätsmedizin Berlin, Berlin, Germany.
Jennifer FaberGerman Center for Neurodegenerative Diseases E.V. (DZNE), Site Bonn, Bonn, Germany.
Heike JacobiDepartment of Neurology, University Hospital Heidelberg, Heidelberg, Germany.
Feng XieCentre for Health Economics and Policy Analysis, Department Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Canada.
Marcus Grobe-EinslerGerman Center for Neurodegenerative Diseases E.V. (DZNE), Site Bonn, Bonn, Germany.
Thomas KlockgetherGerman Center for Neurodegenerative Diseases E.V. (DZNE), Site Bonn, Bonn, Germany.
Bernhard MichalowskyGerman Center for Neurodegenerative Diseases (DZNE), Site Rostock/Greifswald, Patient-Reported Outcomes & Health Economics Group, Ellernholzstrasse 1-2, 17489, Greifswald, Germany.
ESMI and EUROSCA Study groups

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionDue to limited treatment options, managing symptoms has dominated care for Spinocerebellar Ataxia (SCA). Little attention has been given to health-related quality of life (HRQoL) and depressive symptoms experienced by patients across disease duration.

objectiveTo investigate the course of HRQoL and the severity of depressive symptoms in SCA from disease onset to 26 years after onset and identify influencing factors.

methodsWe analyzed data from two longitudinal SCA cohorts, the EUROSCA (European Spinocerebellar Ataxia Registry) and ESMI study (European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative). Multilevel mixed-effects models were employed to demonstrate the course of HRQoL and depressive symptoms severity to investigate the role of disease progression with disease duration as a predictor of interest, along with time-varying clinical variables and time-fixed covariates.

resultsSeven hundred seventy four participants (M

conclusionsThe trend direction of HRQoL and its significant association with the severity of ataxia symptoms align with the literature. The rapid worsening of self-care problems, the differential associations between depression and HRQoL sub-dimensions in different SCA subtypes, and the unexplainable resilience may warrant a deeper look at patient-specific intra- and interpersonal factors.

Indexed as

DepressionQuality of LifeSpinocerebellar AtaxiasAdultAgedDisease ProgressionFemaleHumansLongitudinal StudiesMaleMiddle AgedPeptidesRegistriesSeverity of Illness IndexPeptidespolyglutamineAtaxiaGenetic disorderHealth-related quality of lifePatient-centered carePsychologic well-beingRare disease

Identifiers

PMID40202598
PMCPMC11982069

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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.