Parental experiences of scoliosis management in Rett syndrome
Bibliographic record
Abstract
Background. Scoliosis is the most common orthopaedic complication of Rett syndrome. Parents of affected individuals are vital partners in the clinical management of scoliosis and this study explored parental experiences of various aspects of different management options. Methods. Publicly available Rettnet postings informed the development of an online questionnaire about scoliosis and its management in Rett syndrome. Parents of subjects who met the criteria for Rett syndrome participated in a survey using this questionnaire. Results. One hundred and eighty families participated in this study with scoliosis having developed in 135 (75.4%) of subjects. Eighty-four (62.2% of subjects with scoliosis) had received specific treatment for scoliosis while 51 (37.8%) had not. Surgery was perceived as improving the scoliosis in the majority of subjects but had considerable emotional effects for families of subjects who were less severely affected ( p = 0.055) or older ( p = 0.063). Physiotherapy and bracing were perceived as not reducing the progression of the curve, but physiotherapy was frequently reported to be beneficial to the subject's quality of life and bracing was frequently associated with side effects such as decreased mobility and problems with pressure. Only half of respondents felt that information about scoliosis provided by clinicians was adequate. Conclusions. The perspectives of parents provided useful insights into the complexities of decision-making regarding scoliosis treatment in Rett syndrome. The provision of scoliosis information by clinicians should be more family-centred.
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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 | 0.002 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 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".