儿童血液肿瘤患者舒缓治疗认知现状调查

Investigation on cognitive status of palliative care in childhood hematological malignancies

目的探讨儿童血液肿瘤患者的医生、护士、社工及家长对患儿疼痛管理、舒缓治疗的认知程度。方法设计5个关于儿童血液肿瘤患者营养、生长发育、疼痛管理及舒缓治疗与疗效关系的问题,应用问卷星软件系统发布问卷,于2019年1月至6月随机对上海市儿童医院血液肿瘤科诊治患儿相关的158名医生、护士、社工及家长进行调查,并分析调查结果。结果158份问卷中157份为有效问卷。91.72%(144/157)认为营养与儿童血液肿瘤的疗效关系非常密切或较密切;95.54%(150/157)认为儿童血液肿瘤的治疗必然或可能会影响患儿生长发育。56.05%(88/157)不知道或未听说过儿童舒缓治疗,16.56%(26/157)不知道疼痛管理与舒缓治疗的关系,仅3.18%(5/157)非常了解儿童舒缓治疗。结论大多数儿童血液肿瘤患者的医生、护士、社工及家长对患儿营养和生长发育即躯体方面关注较多,而对患儿疼痛管理及舒缓治疗的关注较少。有必要开展舒缓治疗的系统化培训,以提高血液肿瘤患儿的生命质量。

Objective To investigate the doctors,nurses,social workers and parents'awareness of pain management and palliative treatment of childhood hematological malignancies.Methods A total of 5 questions about nutrition,growth and development,pain management,and the relationship between palliative treatment and therapeutic efficacy of childhood hematological malignancies were designed.And then questionnaire star software system was used to release questionnaire.The investigation was randomly performed among 158 persons including doctors,nurses,social workers and parents who were related with childhood hematological malignancies in Shanghai Children's Hospital from January to June in 2019.The survey results were analyzed.Results There were 157 valid out of 158 questionnaires.The results showed that 91.72%(144/157)of the respondents believed that nutrition had close or very close relation with the treatment effectiveness of childhood hematological malignancies;95.54%(150/157)of respondents believed that the treatment of childhood hematological malignancies was inevitable or possible to impact their growth and development.However,56.05%(88/157)had no awareness or never heard of children palliative care,16.56%(26/157)did not know about the relationship between pain management and palliative care,and only 3.18%(5/157)had a good understanding of children palliative care.Conclusions Most doctors,nurses,social workers and parents of children diagnosed as hematological malignancies pay more attention to the nutrition,growth and development of children,however,less attention has been paid to the pain management and palliative treatment of childhood hematological malignancies.Therefore,it is necessary to carry out systematic training of palliative therapy for doctors,nurses,social workers and parents engaged in children diagnosed as hematological malignancies,so as to improve the quality of life of children with hematological malignancies.