MétaCan
Menu
← Back to cohort
Record W4415755970 · doi:10.1080/09638288.2025.2571068

Health-related quality of life, pain, and fatigue in myotonic dystrophy type 2: a 13-year follow-up study

2025· article· en· W4415755970 on OpenAlexaboutno aff
M. Damen, Karlien Mul, Baziel G.M. van Engelen, Nicol C. Voermans, Alide A. Tieleman

Bibliographic record

VenueDisability and Rehabilitation · 2025
Typearticle
Languageen
FieldNeuroscience
TopicGenetic Neurodegenerative Diseases
Canadian institutionsnot available
Fundersnot available
KeywordsMyotonic dystrophyDiseaseQuality of life (healthcare)Mental healthRehabilitationMyotoniaHealth careQuality (philosophy)

Abstract

fetched live from OpenAlex

PURPOSE: To examine the long-term progression of health-related quality of life (HRQoL), pain, and fatigue in myotonic dystrophy type 2 (DM2) compared to adult-onset myotonic dystrophy type 1 (DM1). MATERIALS AND METHODS: Data on HRQoL (Short Form 36 Health Survey (SF-36)), pain (McGill Pain Questionnaire), and fatigue (Checklist Individual Strength) were assessed in DM2 patients and age- and sex-matched DM1 patients, at baseline and after 13 years. RESULTS: Twenty-nine DM2 and 29 DM1 patients participated at baseline. Data of 18 DM2 and 16 DM1 patients were recollected at follow-up. Ten DM2 and 13 DM1 patients had passed away, and one DM2 patient did not consent participation. In DM2, mental health on SF-36 subscales (social functioning, mental health) decreased during follow-up without significant increase in pain or fatigue. In contrast, in DM1, both physical and mental health decreased, and pain and fatigue increased. CONCLUSIONS: HRQoL decreased over 13 years in DM2. Pain was present early in the DM2 disease course and did not increase significantly. Healthcare professionals should be aware of the long-term impact of myotonic dystrophy (DM) on pain, fatigue, physical and mental functioning, including social functioning. Symptomatic treatment of these aspects may decrease disease impact, because DM cannot be cured.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame machine prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.

metaresearch head score (Codex)0.001
metaresearch head score (Gemma)0.001
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.006
Threshold uncertainty score0.012

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0010.001
Meta-epidemiology (narrow)0.0010.000
Meta-epidemiology (broad)0.0010.001
Bibliometrics0.0010.001
Science and technology studies0.0010.000
Scholarly communication0.0010.001
Open science0.0000.001
Research integrity0.0010.001
Insufficient payload (model declined to judge)0.0010.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.039
GPT teacher head0.333
Teacher spread0.294 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designObservational
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations0
Published2025
Admission routes1
Has abstractyes

Explore more

Same venueDisability and Rehabilitation→Same topicGenetic Neurodegenerative Diseases→French-language works237,207→