ABSTRACT
Objective To investigate the current situation of disability acceptance and alexithymia among uremia patients,and to explore the effects of alexithymia on disability acceptance.Methods Totally 342 uremia patients were recruited by convenience sampling method.Patients were investigated with general information questionnaire,Acceptance of Disability Scale (ADS) and the Toronto Alexithymia Scale (TAS-20).Results The mean scores of disability acceptance and alexithymia were 180.45±26.93 and 52.35±8.24,respectively.The affective disorder of recognition,affective disorder of description and extroverted thinking were significantly negatively correlated with each dimension of disability acceptance(P＜0.05).Multiple linear regression analysis showed that alexithymia,gender and course of disease were influencing factors of disability acceptance for uremia patients(P＜0.05).Conclusion The level of disability acceptance was in the medium level among uremia patients,and alexithymia,gender and course of disease were its influencing factors.Nursing staff could take effective measures to ameliorate alexithymia and to improve the level of disability acceptance for uremia patients.
ABSTRACT
Objective To explore a medical insurance model for rare diseases and orphan drugs applicable in China.Methods Eleven rare diseases from six disease systems and thirty-five orphan drugs covered were pinpointed for comparative analysis of their present coverage in various medical insurance systems in China.Results The coverage of 35 orphan drugs in the national essential drug list(2009)and the national essential drug list(2012)is 0 and 37.1％ respectively; the coverage in the national essential insurance medicine list is 54.3％ (19 types),and the average coverage in the medicine list for the New Rural Cooperative Medical Insurance Scheme is 33.6％.The study found insufficient rare diseases included in the Basic Medical Insurance Schemes in general.Conclusion The coverage of basic medical insurance for rare disease patients is low in China.In this regard,such measures should be taken to mitigate the economic burden for these patients,namely expanding the coverage of reimbursement list of orphan drugs,building the special reimbursement system of rare diseases and orphan drugs and improving the medical rescue system for rare diseases in China and their medical care level.