A Global Survey of Patient and Caregiver Experiences Throughout Care for Developmental Dysplasia of the Hip
Bibliographic record
Abstract
BACKGROUND: Diagnosis and treatment for developmental dysplasia of the hip (DDH) varies greatly depending on condition severity, age at diagnosis, and professional opinion. Little is known about patient experiences across the globe. We aimed to characterize global patient and caregiver experiences during DDH care and to highlight patient-identified priorities. METHODS: We developed a cross-sectional survey in collaboration with 7 DDH outreach organizations. DDH patients and/or their caregivers (above 18 y old) were invited to complete an international online survey about their experiences. Participants were recruited through web media of all collaborating organizations. Data collection took place over 3 months. Descriptive statistics were used to analyze quantitative results. Qualitative content analysis was used to categorize open-ended responses. RESULTS: A total of 739 participants completed the survey, representing 638 (86.3%) parents/guardians of DDH patients, and 101 (13.7%) patients. Three hundred eighty-six (52.2%) participants received diagnosis by 3 months of age; mean age of diagnosis was 15.96 months (90% confidence interval=12.04, 19.91). Of 211 participants with family history of DDH, 68 (32.3%) did not receive DDH screening. Of 187 patients born breech, 82 (43.9%) did not receive DDH screening. In total, 36/94 (38.3%) participants with both family history and breech birth did not receive DDH screening. Most participants reported treatment (696/730, 95.3%), including bracing (n=461) surgery (n=364), and/or closed reduction (n=141). A total of 144 patients reported >1 surgery; 82 reported >3 surgeries. Participants reported a range of 1 to 400 visits to health care professionals for DDH care across 1 to 66 years. Lack of information and resources on treatment practicalities and timelines, along with emotional burden of diagnosis, were greatest challenges reported. CONCLUSION: Results demonstrate that DDH diagnosis and treatment can pose significant burden on patients and caregivers. Reliable public information is needed to support those affected. Global educational efforts are needed to raise awareness of DDH risk factors, signs, and symptoms among care providers, to increase awareness and improve identification, screening, and monitoring of at-risk children.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".