2023 Volume 4 Issue 2 Pages 16-21
【Object】This survey has clarified the possibilities and problems brought by home-based enzyme replacement therapy for patients with mucopolysaccharidosis and their families.
【Methods】Questionnaire survey. Interview survey.
【Results】The survey results showed that 66% of the respondents who wanted to receive home-based enzyme replacement therapy also hoped for home-visit medical care. The home-based enzyme replacement therapy showed the possibilities of reducing the load of a regular hospital visit by lowering the risk of infection and balancing the patient’s social life and medical treatment. One of the reasons the home-based enzyme replacement therapy was not realized, although the patients and their families had the desire to do it, was the poor system of regional health care service. Those who did not hope for home-based enzyme replacement therapy answered that it was hard to imagine receiving the therapy at home, and they were worried about how to cope with the side effects. They also wanted to draw a line between home and the place where they receive medical care. Home-based enzyme replacement therapy should be more understood and promoted by providing patients and their families with more information, including the advantages and disadvantages of the therapy.
【Conclusions】At the same time, the regional healthcare system should be improved so as to respond to patients' requests for home-based enzyme replacement therapy.
