Choices are inevitable: A qualitative exploration of the lifecosts of systemic lupus erythematosus
Bibliographic record
Abstract
OBJECTIVES: (direct and indirect economic costs and beyond) to those with systemic lupus erythematosus in Canada. METHODS: Using a biopsychosocial conceptual framework and integrated knowledge translation approach, qualitative semi-structured interviews were conducted with 3 physicians, 5 representatives from systemic lupus erythematosus advocacy groups, and 29 adult systemic lupus erythematosus patients. Themes emerged deductively and inductively, and the theme code set was used to code all transcripts. RESULTS: Three dominant themes emerged: (1) impacts of systemic lupus erythematosus on quality of life, relationships, and health; (2) costs linked to healthcare; and (3) impacts of living with systemic lupus erythematosus on employment/economic standing. DISCUSSION: Whereas previous work has focused almost exclusively on the direct, individual costs of systemic lupus erythematosus, the biopsychosocial approach taken here emphasizes not only the individual and intermediate factors (such as the workplace and family), but also the system-level factors (i.e. system-level policies) that influence quality of life, healthcare, and employment/economic experiences of those with systemic lupus erythematosus. Results indicate a need to target interventions beyond the individual and their immediate context, and recognize that lifecosts are shaped significantly by systems-level action.
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 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 | 0.012 | 0.012 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.016 | 0.013 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.004 | 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".