UK physicians’ attitudes and practices in long-term non-invasive ventilation of Duchenne Muscular Dystrophy
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Bibliographic record
Abstract
Previous studies have shown that long-term non-invasive ventilation (NIV) is not always routinely offered by all physicians in Duchenne Muscular Dystrophy (DMD), despite evidence that this treatment improves quality of life and survival. This study examined UK physicians’ practices related to respiratory follow-up and DMD ventilation. A mailed questionnaire was used. Thirty-eight of the 59 (64%) UK physicians identified via the Muscular Dystrophy Campaign (MDC) responded. Eighty-one per cent of respondents felt ethically obliged to discuss NIV with families while 13% believed that NIV results in poor quality of life. Forty-seven per cent of physicians discuss in-depth the use of NIV when the patient is in respiratory failure. Eighty-four ventilated DMD patients in the respondents’ practice use NIV (via Bi-Pap Nasal mask). Nearly 66% of physicians do not consider the public cost to be an impediment to offering NIV, despite significant problems with resources’ allocation in their area. While the majority of UK physicians have comparable attitudes and practices regarding NIV, the questionnaire highlighted that not all specialists were aware of the existence of consensus guidelines regarding respiratory monitoring. In addition, different practices of disclosure of life-prolonging ventilation options were used by different physicians. Seventy-one per cent of physicians wished for national consensus guidelines for different DMD age groups.Estudios previos han demostrado que la ventilación no invasiva a largo plazo (NIV) no siempre es ofrecida en forma rutinaria por todos los médicos a los pacientes con Distrofia Muscular de Duchenne (DMD), a pesar de existir evidencia de que este tratamiento mejora la calidad de vida y la sobrevivencia. Examinamos las prácticas de los médicos del Reino Unido en relación al control y el seguimiento de la respiración y la ventilación en pacientes con DMD. Se utilizó un cuestionario por correo. Solo 38 de los 59 (64%) médicos del Reino Unido, identificados a través de la Campaña de Distrofia Muscular (MDC), respondieron. 81% de los que respondieron se sintieron obligados éticamente a discutir NIV con las familias, mientras que el 13% creían que la NIV daba como resultado una pobre calidad de vida. 47% de los médicos discutieron a profundidad el uso de la NIV cuando el paciente se encuentra en falla respiratoria. 84 pacientes con DMD y con asistencia ventilatoria en la consulta de los médicos que respondieron, usaban NIV (a través de una mascara nasal Bi-Pap). Casi el 66% de los médicos no consideraban el costo al público como un impedimento para ofrecer a la NIV, a pesar de haber problemas significativos en la asignación de recursos en el área. A pesar de que la mayoría de los médicos del Reino Unido tenían practicas y actitudes comparables en relación al NIV, el cuestionario resaltó que no todos los especialistas estaban conscientes de la existencia de guías consensuadas en relación al monitoreo respiratorio. Además diferentes médicos usaban formas diferentes de brindar la información acerca de las opciones de ventilación para prolongar la vida. 71% de los médicos expresaban su deseo por guías consensuadas a nivel nacional para los diferentes grupos de edades con DMD.Palabras clave: ventilación mecánica, creencias médicas, Distrofia Muscular de Duchenne.Abreviaturas: DMD: Distrofia Muscular de Duchenne, LTV: Ventilación a largo plazo, NIV: Ventilación no invasiva, MDC: Campaña de Distrofia Muscular, FUC: Capacidad vital forzada.
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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 | 0.006 |
| 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 it