Quality of life of adolescents with genodermatosis evaluated at specialist consultation in Las Tunas
Keywords:
medical genetics, genodermatosis, quality of life, Ehlers–Danlos´ syndrome, neurofibromatosis.Abstract
Introduction: Genodermatoses are a large group of rare inherited skin conditions. Sufferers often have to endure stigmatization and social rejection. A high proportion of the genetic diseases diagnosed in the province of Las Tunas are genodermatoses.
Objective: Evaluate the quality of life of adolescents with genodermatosis attending specialized multidisciplinary consultation in the province.
Methods: A sample of 51 adolescents answered a general quality of life questionnaire adopted by the National Dermatology Group for chronic dermatosis patients. The variables considered were physical, functional, psychological and social health. The study was conducted by the Provincial Genetics Department at Mártires de Las Tunas Provincial Pediatric University Hospital in the period 2016-2018. The arithmetic mean was estimated with a value scale, and percentages were calculated to determine the frequency of the various conditions. Results were expressed in contingency tables.
Results: The quality of life of adolescents with genodermatosis was predominantly satisfactory in the physical health dimension (49.02%), unsatisfactory in the functional health dimension (52.94%), poor in the psychological dimension of all the genodermatoses studied, and good in the social dimension (62.75%).
Conclusions: The study showed the usefulness of a questionnaire about the quality of life of adolescents with genodermatosis applied to relatives and doctors from the province. It was found that quality of life is associated to the individual's personality, their well-being and their satisfaction with the life they lead.
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