A systematic approach to analyse health-related quality o f life in multiple sclerosis: the GEDMA study
Bibliographic record
Abstract
Objective: To descr ibe a ho listic and comprehensive approach to the assessment of sufferer ’s perceptio ns o f health-r elated quality of life (HRQ oL) in a cohor t of multiple sclero sis (MS) patients. Methods: The GEDMA (G rupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongo ing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample o f MS patients recruited from 13 hospitals in Madr id, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status character istics o f patients, as well as implementing a modified Spanish version of the Functio nal A ssessment of Multiple Sclerosis quality of life instrument. Pr imary caregivers were interviewed using a specific pro toco l combined with the Zarit Burden Inter view. Results: The index cohort comprised 371 MS patients (68.7 % female) o f mean age 38.99/0.9 years. A ge, sex and clinical form distr ibution were similar to o ther MS population-based surveys. There were 258 (69.5%) relapsing¡/remitting (RR) MS patients and 113 (30.5%) progressive MS patients. More than one-thir d of the married patients with progressive MS and almost a quarter o f the RRMS patients separated or divorced fo llowing a diagnosis of MS; 71.3 % of the progressive MS patients as well as 65.8 % of the RRMS patients were unemployed as a consequence of the disease. Q ualitative analysis showed that friendship and family relatio nships and occupational status were the most significant dimensions influenced by MS. O n the other hand, the speech analysis o f pr imary caregivers showed that emotional burden was related to patients ’ physical disability. Furthermore, pr imary caregivers descr ibed the influence of MS on their own occupatio nal status, their nonacceptance of the disease, a perceptio n of a lack of suppo rt by other members o f the family as
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot 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.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.046 | 0.076 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.004 |
| Bibliometrics | 0.011 | 0.010 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
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.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
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".