Respiratory Symptoms, Health-Related Quality of Life, Physical Activity and Symptom Management in Ehlers-Danlos Syndromes and Generalized-Hypermobility Spectrum Disorders: A Mixed-Methods Study
Bibliographic record
Abstract
Ehlers-Danlos Syndromes (EDS) and Generalized Hypermobility Spectrum Disorders (G-HSD) are connective tissue disorders with multi-systemic manifestations. Individuals with EDS or G-HSD experience respiratory symptoms which may have a negative impact on health-related quality of life (HRQL), functional capacity, and fatigue. Notably, unmet symptom management needs are reported by patients. The overarching goals of this thesis were to describe respiratory symptoms in EDS and G-HSD and their association with key patient-reported outcomes and identify the respiratory symptom experiences and management needs. We found that dyspnea was associated with a lower physical component of HRQL, lower functional capacity, higher fatigue severity, and contributed to a cycle of inactivity. Respiratory symptoms (e.g., dyspnea) were a barrier to physical activity and limited daily activities. Respiratory symptoms were defined by a shared characteristic of ‘invisibility’ and were under-recognized in clinical care. Coherent care plans were emphasized by patients as beneficial in improving their respiratory care.
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 | 0.005 | 0.005 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.001 |
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".