Evaluation Of Hebei Province To Investigate The Quality Of Life And Economic Burden In Children With Cerebral Palsy

In recent years，the incidence of cerebral palsy disease is rising year by year inour country. According to the screening data of birth defects in children aged0to6inHebei province in2008，the number of children with cerebral palsy is ranking first.The absolute number of patients with cerebral palsy although not much，but the costsof treatment and rehabilitation is large，and often need long-term care，hindered thedevelopment of the capacity of the family production，bring heavy economic burdento the society. At present，the domestic basic data related to cerebral palsy disease isnot enough，especially not quantitatively reflect the survival status，treatment costsand family burden of children with cerebral palsy. We conducted this study to furtherinvestigate the cerebral palsy disease economic burden and social harm，to formulaterelevant policy，deal with the disease，improve cerebral palsy family dilemma，whichhas positive significance.The purpose of the study: This research is based on large-scale screening basicdata of birth defects in children aged0-6in Hebei Province in2008. samplinginvestigation of cerebral palsy children living state，treatment costs and familyburden，from multiple perspectives such as society，family，intervention，to evaluatethe problem related to cerebral paralysis disease，so as to cope with the disease，toenhance the life quality of children，promoting family development ability，to providethe basis for decision making and policy suggestions.Research methods：this study adopts the method of multistage cluster sampling，cerebral palsy in children from hebei province by random sampling，the children withcerebral palsy who were extracted from various counties (cities) as the object of thepresent study，and then household surveys，interviews，and fill in the questionnaire.All questionnaires and item EpiData software was used to input data，after conversionSPSS19.0statistical analysis software was applicated for statistics andanalysis.Cerebral palsy using direct method to calculate a economic burden of disease，cerebral palsy patients and family life quality using the EQ-5d scale，qualitative quantitative analysis.Results：1. cerebral palsy disease led to the financial burden of the family.By calculation，each patients with cerebral palsy caused family economic burden on average is about935100yuan in hebei province，including53400yuan for the direct medical costs，the indirect economic burden is881700yuan. Analysis of cerebral palsy patients fromthe family economic burden，the self-development ability of the cerebral palsy familyis poor，spending more，less income，along with the social average per capita incomegrowth，cerebral palsy family economic status and the gap between ordinary familyeconomic conditions have been gradually expanding trend.2. cerebral palsy disease causes the enormous social and economicburden.Cerebral palsy，The social and economic burden of Hebei province peoplewith cerebral palsy is up to about240.836billion yuan，including5.066billion yuanin direct economic burden and235.77billion yuan in indirect economic burden.Laborvalue loss accounted for about90%of the social and economic burden. Treatment，rehabilitation and special education directly to the liberation and development of thepatients and their caregivers of labor ability，that is the most effective way to reducethe economic burden of cerebral palsy disease.3. cerebral palsy patients and their families living quality is worrying.From themeasurement results in340children with cerebral palsy EQ-5d，the average scorewas0.44，lower than the national level in the general population. The problems in fiveaspects such as action，take care of themselves，daily activities， pain/discomfort，anxiety and depression of patients with cerebral palsy proportion is respectively：87.81%、94.34%、94.34%、58.43%、72.05%. significantly higher than the nationallevel of the general population. The average VAS score is27points，significantlylower than the national level in the general population.The main factors affecting thelife quality of patients and their families with cerebral palsy are，mother’s education，have no brothers or sisters， hospital treatment， operation treatment， education，health status，etc.Whether to accept the regular treatment of cerebral palsy patients， degree of mother culture，had a great effect on whether to accept the schooleducation，and even affect the quality of life of the whole family. it is significant andeven affect the entire family quality of life education influence.Policy Suggestions： the relevant government departments should attach greatimportance to cerebral palsy disease of serious harm，and actively take effectivemeasures. First，to integrate the social rescue resources，the establishment ofgovernment-led，the department responsible for the work，social participation systemand set up scientific mechanism of rescue service system.Second，the implementationof early intervention，try to be early discovery，early diagnosis，early treatment，earlyrehabilitation training.Third，the medical and health care，education，civil affairs，disabled persons’ federation， public welfare institutions and other governmentdepartments and related organizations， should perform their duties， activelyintroduced related to cerebral palsy group therapy，rehabilitation，education，employment and other support assistance policy.