Solernou FAJ, Zaldívar VT, Oyola VCE, Lorenzo RA

Language: Spanish
References: 12
Page: 1-11
PDF size: 191.69 Kb.

ABSTRACT

Introduction: Psychology in the 21st century has the mission of getting closer to the psychological well-being of people, a task that is present in the search for interdisciplinary alternatives for the confrontation of diseases such as Steinert's Myotonic Dystrophy, genetic disease, neuromuscular disease of progressive deterioration of the quality of life of those who suffer it.
Objective: Identifying psychosocial characteristics of a group of patients with Steinert's Myotonic Dystrophy that they are attended in the Institute of Neurology and Neurosurgery of, Cuba.
Methods: Mixed methodology has been employed, with a predominance of the quantitative approach. A semi-structured interview and the elaboration of a familiogram were applied to each of the 15 patients with Steinert's Myotonic Dystrophy studied in the period from January to March, 2016 at the Institute of Neurology and Neurosurgery of Havana, Cuba. The data collected in a matrix were processed using the SPSS program (20.0), applied the percentage calculation and elements of descriptive statistics (mean and standard deviation).
Results: Among the results, the lack of previous knowledge about the disease in these patients stands out as a worrying element, even though many have relatives with the same disease.
Conclusions: Given the lack of information evidenced on these patients in Cuba, a multidisciplinary study of greater scope is required to contribute to the psychological well-being of the same ones.

REFERENCES

1. Darras Basil T. Myotonic dystrophy: Etiology, clinical features, and diagnosis. UpToDate; 2009.

2. Meola G. Clinical aspects, molecular pathomechanisms and management of myotonic dystrophies. Acta Myologica. 2013;XXXII:154-65.

3. O'Sullivan S, Corrine B, Robin L. Myotonic Dystrophy: Making an Informed Choice About Genetic Testing: Medical Genetics and Neurology. University of Washington.Medical Center; 2000.

4. Rosado Bartolomé A, Gutiérrez Gutierrez G, Sierra L. Distrofia miotónica de Steinert. Nuevos paradigmas asistenciales. "Para saber máis". 2015;21:43-8.

5. Kamsteeg EJ, Wolfram C. Best practice guidelines and recommendations on the molecular diagnosis of myotonic dystrophy types 1 and 2. European Journal of Human Genetics; 2012.

6. Thornton Ch. Myotonic Dystrophy. Neurol Clin. 2014;32(3):705-19.

7. Bird TD. Myotonic Dystrophy Type 1 Synonym: Steinert's Disease; 2015.

8. Suarez Vera D. Personalidad cáncer y sobrevida. La Habana: Editorial Científico Técnica; 2002.

9. ASEM.Distrofia Miotónica de Steinert Monografías myoline; 2004.

10. Seijas Gómez R, Basterra Jiménez I. Estudio descriptivo del perfil neuropsicológico y psicopatológico en pacientes con distrofia miotónica tipo 1. Rev Neurología. 2015;61(12):529-35.

11. Serra L, Cercignani M. "I Know that You Know that I Know": Neural Substrates Associated with Social Cognition Deficits in DM1 Patients. PLoS One. 2016 [citado 3 de junio 2016];11(6):e0156901. do: 10.1371/journal.pone.0156901

12. Hernández Sampieri R, Fernández Collado C, Baptista Lucio MC. Metodología de la Investigación. México; 2010.