The 20th Congress of RSCANP,

Băile Felix, 18-21.09.2019

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20th RSCANP Congress
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The 42st National Conference of Child and Adolescent Neurology and Psychiatry and Allied Professions with international participation


PSYCHOSOCIAL EFFECTS OF HEMOPHILIA ASSISTANCE

Autor: Maria Puiu Marghit Şerban Violeta Olivia Stan Emilia Ursu
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ABSTRACT:

Hemophilia is a pathology with unfavorable outcome, with high incidence of locomotor disabilities, which need an expensive treatment. Health status in chilhood has direct consequences in socio-economic status of adulthood. There is a bi-directional relation between psycho-socio-economic status and health state in hemophilia patient. Objective

During this study we proposed to estimate the impact of hemophilia on psychological and socio-economical status of the patient. Material For this study were enrolled 216 PwH hospitalised in Third Clinic of Pediatrics Timişoara and Clinical Center for Evaluation and Reha­bilitation “Cristian Şerban” Buziaş, during the period december 2008 – may 2009:186 patients with hemophilia A and 30 patients with hemophilia B, < 18 years – 95 patients and >18 years -121. Method

Our study group was clinico-biologically analysed, and for self-assessment of current general health was used the questionnaire EQ5D (European Quality of Life-5 Dimensions). Also, the presence of other psychological disorders and social impact were estimated. Results

Those under the age 18-21,05% had pain on motion, vs the group >18 years, 66.92% with persistent pain. According to number of hemorrhages in last 6 months in <18 years group 21,05% had over 10 hemorrhages vs >18 years – 57,45%. Total joint score was 18,03±19,4in children and 35,52±21,73in adults. We assessed QOL using EQ;5D questionnaire. Age impacted all EQ;5D domains, as in severity influence, except anxiety and depression. Significant differences were observed in mobility, pain domains, in VAS and descriptive utilities, related to socio-professional status. Patients treated exclusively in HCC had better scores in all EQ;5D domains; significant differences were noticed in VAS. According to social insertion, only 35,13% among adults were employed. Deficiency in health status was reported in 29% of toddlers, 60% in group 6-9 age, ~70% in pre-adolescents and 75% adolescents group. Regarding adult category, deficiency was reported in 45,8%, disability in 27% and 12,3% were handicapped and needed social support. Conclusions

Hemophilia has unfavourable consequences on patient due the disabilities that occur during the evolution of the disease.