重型β地中海贫血患儿及家长联谊会对提高患儿治疗依从性的意义

Improving Treatment Compliance through Sodality between Children with β-thalassemia Major and Their Parents

目的探讨重型β地中海贫血(β地贫)患儿及家长联谊会对提高患儿治疗依从性的价值与意义。方法定期举办重型β地贫患儿及家长联谊会,邀请地贫患儿和家长参加,会议内容包括:①地贫专家讲授重型β地贫的治疗方法和系统正规治疗的重要意义并由专家回答家长的问题;②坚持系统正规治疗、生长发育正常、生存质量好的患者做文体表演;③坚持系统正规治疗、生长发育正常、生存质量好的典型患儿家长做家庭护理经验介绍;④发放各种地贫知识书籍;⑤地贫患儿联欢游艺活动,医护人员与家长交流活动。结果定期到医院输血和除铁治疗的患儿逐年增加,正规输血和除铁的患者逐年增多。结论重型β地贫患儿及家长联谊会对提高患儿治疗依从性有重要意义。

Objective To investigate the significance of sodality between children with β-thalassemia major and their parents in improving treatment compliance.Methods Sodality on β-thalassemia major was conducted regularly.Children with β-thalassemia major together with their parents were invited.The sodality included the following contents.① Experts explained the therapy of β-thalassemia major and the importance of systemic and regular treatment,then answered the questions from parents.② Children persist in systemic and regular treatment with normal growth and good quality of life gave recreation and sports performance.③ Parents of the above children introduced their experience on family tendency.④Hand out books about β-thalassemia.⑤ Get-together was held for patients,while communication activity was carried out for medical care staff along with patients＇ parents.Results Patients who accepted transfusion and deiron on regular schedule were more and more year by year in our hospital.Conclusion Sodality between child patients with β-thalassemia major and their parents can significantly improve treatment compliance.