“Don't Give Up, Advocate for Yourself”: A Pilot Study Examining Healthcare Experiences of People with Mayer Rokitansky Küster Hauser Syndrome
Bibliographic record
Abstract
STUDY OBJECTIVE: Mayer Rokitansky Küster Hauser syndrome (MRKH) is characterized by the underdevelopment or absence of the uterus and upper vagina. Navigating healthcare interactions may present unique challenges for those with MRKH as there appears to be sparse clinical education and research available to healthcare providers. Additionally, limited research exists on the healthcare experiences of people with MRKH. This pilot study investigated the diagnostic journeys, post-diagnosis experiences, current healthcare interactions, and attitudes toward the healthcare system among individuals with MRKH. METHODS: Participants with MRKH residing in the United States or Canada took part in semi-structured interviews on their MRKH-related healthcare experiences. Interview transcripts were thematically analyzed. RESULTS: People with MRKH conveyed that: (1) MRKH was not well known by healthcare providers and they were seldom provided with information and resources about MRKH, (2) they often needed to advocate for themselves in the healthcare system to receive adequate care, (3) sensitivity, inclusion, and knowledge from healthcare providers was invaluable, and 4) healthcare-system level barriers prohibited access to adequate care. CONCLUSIONS: Information and resources for MRKH patients should be age-appropriate, patient-centered, trauma-informed, and locally based. Providers should have access to evidence-based information and resources about MRKH, which includes knowledge of local specialist physicians, mental health specialists, pelvic health physical therapists, and other allied health professionals. Providers should also limit assumptions and use sensitive and inclusive language when communicating with patients around MRKH diagnosis, education, and development of treatment plans. Lastly, strategies for mitigating healthcare barriers should consider those with MRKH.
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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 | 0.004 | 0.012 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.009 | 0.005 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.002 | 0.005 |
| Insufficient payload (model declined to judge) | 0.003 | 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".