Délai diagnostique et chronologie d’apparition des symptômes dans le parcours de soin des patients atteints de sclérose latérale amyotrophique en Aquitaine

Abstract : Background: this study assesses diagnosis delay in amyotrophic lateral sclerosis (ALS) and symptoms chronology according to intermediate stages at various health professionals. Methods: detailed study of the care pathway of the 90 patients treated by ALS multidisciplinary centre of Bordeaux University Hospital in 2013. Results: mean diagnosis delay is 17.0 months [13.1 – 21.3], with a median of 12 months. 54% of the diagnosis time is lost before seeing the suitable specialist: 2.7 months (on average) between symptoms onset and first complain to the general practitioner, then 6.5 more months before first neurologist consultation. This period could be shortened, particulary by early prescription of additional examinations (p = 0.01); the various back and forths between specialists extend this step. In total, diagnosis delay constitutes 40% of the overall time of the disease evolution. ALS multidisciplinary centre has a key role around diagnosis as 73% of its patients consult (for the first time) 4 months before or after diagnosis. Symptoms have a median apparition delay of 6 months before diagnosis. Combination of speech disorders with (upper or lower) limb weaknesses is present among 89% of the patients. These two symptoms could help all practitioners for early diagnosis. Conclusion: diagnosis delay is proportionally lengthy compared to total survival duration. It seems longer than previous studies because it represents the total delay before diagnosis advertisement or treatment beginning. Fast prescription of additional examinations and clinical mastering (in particular linking two bulbar and spinal symptoms) could shorten this delay.
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Master Thesis
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Martin Matharan. Délai diagnostique et chronologie d’apparition des symptômes dans le parcours de soin des patients atteints de sclérose latérale amyotrophique en Aquitaine. Médecine humaine et pathologie. 2017. ⟨dumas-01636644⟩

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