The Role and Evaluation of Clinically Integrated Exercise and Rehabilitation Therapy in Ehlers-Danlos Syndromes
Bibliographic record
Abstract
Background: Ehlers-Danlos Syndromes (EDS) are a group of heritable connective tissue disorders that manifest in widespread pain and hypermobility. Few studies have employed exercise as therapy in people with EDS, despite its use addressing similar symptoms in non-EDS contexts. The aims of this thesis are to describe and evaluate the role of clinically integrated exercise and rehabilitation therapy (ERT) in people with EDS. Methods: For study 1, we systematically reviewed evidence related to ERT in EDS and evaluated studies on quality and risk of bias (RoB). In study 2, we conducted a cross-sectional survey about the behaviours, beliefs, barriers and facilitators, preferences and goals related to ERT in Canadians with EDS and generalized hypermobility spectrum disorders (G-HSD). Participants were recruited from the GoodHope EDS Clinic (Toronto, Ontario) and EDS agencies. For study 3, we conducted a program evaluation of the GoodHope Exercise and Rehabilitation program (GEAR), an outpatient ERT service for EDS/G-HSD using the RE-AIM framework. Results: In study 1, the literature search yielded 10 eligible studies (5 randomized control trials (RCTs) and 5 non-RCTs). Two RCTs were rated as high quality with low RoB, and four non-RCTs as critical RoB. In study 2, 45 participants completed the survey with 51% meeting the Canadian physical activity guidelines. The majority of participants found exercise to be important in long-term management of EDS/G-HSD (69%), fear of injury as the leading barrier to exercise (64%), improving/maintaining physical capacity as their ERT-related goal (47%), and a preference for ERT programming to be delivered by a healthcare professional (100%). In study 3, 120 participants completed the GEAR program during the evaluation period. Improvements in functional capacity were seen from baseline to 8- and 20-weeks (p< 0.001). A secondary exploratory analysis indicated that baseline pain intensity (p< 0.001) and completion per protocol (p=0.023) moderated the effect of treatment on pain intensity. Conclusion: Adequately powered and rigorous RCTs of exercise and rehabilitation interventions in EDS are needed. Patient-centered recommendations should be considered in the optimization of ERT programming for EDS care. ERT may be beneficial for functional capacity, and potential benefits may be moderated by pain intensity and program engagement.
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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 | 0.036 | 0.068 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.002 | 0.002 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.003 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.002 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 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".