Concealment and denial of diagnosis in amyotrophic lateral sclerosis

G.N. Levitsky, A.B. Berdalin, E.A. Kovrazhkina, A.G. Sanadze, V.V. Shestachenko, O.V. Vidergoldt

1) Nina Levitskaya Russian Charity ALS Foundation, Moscow, Russia; 2) LLC Gleb Levitsky Clinic with Private ALS Center, Moscow, Russia; 3) Federal Center for Brain and Neurotechnologies FMBA of Russia, Moscow, Russia; 4) Moscow Myasthenic Center, Moscow, Russia

Backgroud. Denial of diagnosis is a problem well covered in the literature; concealment of diagnosis by relatives from patients is a problem of the past than the present in modern medical practice, nevertheless it occurs.
Objective. Clarification of the relationship between the phenomena of concealment and denial of the ALS diagnosis, combined into a common group on the basis of inadequate information about the diagnosis.
Methods. Analysis of a sample of 103 ALS patients with revealed denial of the diagnosis in 6.8% of cases, and concealment of the diagnosis also in 6.8% of cases.
Results. The group of ordinary patients and the combined group of patients with the phenomena of concealment and denial of diagnosis did not differ in demographic and clinical characteristics. The influence of these phenomena on the life expectancy of patients could not be established, because patients with these phenomena were not followed-up. Clinical examples of these phenomena are presented.
Conclusion. The participation of a clinical psychologist in the managment of such patients is recommended.

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About the Authors

Corresponding author: Gleb N. Levitsky, Nina Levitskaya Russian Charity ALS Foundation, LLC Gleb Levitsky Clinic with Private ALS Center, Moscow, Russia; alsrus@gmail.com

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