肺癌患者与家属对肺癌康复教育需求的现况调查

An investigation of rehabilitation education needs in patients with lung cancer and family members of them

目的探讨我国肺癌患者和家属对肺癌康复教育的需求。方法选取2019年10~12月间中国大陆31个省、自治区、直辖市共1714名调查对象开展网络问卷调查,采用横断面调查和方便抽样的方法,网络问卷提前设置逻辑限定,回收合格问卷1700份。包括816名肺癌患者和884名肺癌患者家属。调查分析肺癌患者和患者家属对肺癌康复教育的需求。结果肺癌患者和患者家属在性别、地区和上网频率方面无较大差异,肺癌患者家属的年龄较肺癌患者偏大,差异有统计学意义(P<0.05)。肺癌患者中,女性偏多(52.1%),年龄多在41~50岁(32.8%),多来自东部地区(61.8%),大部分偶尔上网或不上网(64.5%)。肺癌患者家属中,女性偏多(52.8%),年龄多在61岁及以上(33.6%),多来自东部地区(60.3%),大部分偶尔上网或者不上网(63.6%)。肺癌患者和患者家属目前获知肺癌疾病知识前三位的途径均为互联网渠道、医疗机构和患者群/社区交流,希望从肺癌康复教育平台获知的最主要内容均为肺癌诊疗科普知识指导、疾病康复的指导与建议和疾病医学及药品知识。从目前获知肺癌康复教育平台的途径来看,患者多通过医务人员(40.2%)和慈善组织(23.2%)获知康复教育的信息,患者家属多通过医务人员(41.6%)和互联网渠道(24.1%)获知康复教育知识,差异有统计学意义(P<0.05)。从未来希望采取的肺癌康复教育的形式来看,肺癌患者选择肺癌专家讲座及医患交流(53.1%)的比例高于患者家属(46.4%)。在对不同性别患者和患者家属对肺癌康复教育的需求进行分析后,仅发现性别对患者家属在希望采取的肺癌康复教育形式上存在差异,女性患者家属更希望采用专家讲座及医患交流(48.0%)、科普文章(18.0%)和患友经验分享(13.1%)形式,而男性患者家属更希望采用专家讲座及医患交流(44.6%)、科普文章(18.0%)和专家视频讲座(14.6%)形式开展肺癌康复教育。结论采用适宜的康复教育形式,对肺癌治疗和康复知识在肺癌患者和患者家属的同步康复教育的开展中具有重要意义。

Objective To ivestigate the rehabilitation education needs in lung cancer patients and their family members in China.Methods Using cross-sectional survey and convenient sampling method,1714 particants were given web-based questionnaires in 31 provinces,autonomous regions and municipalities directly under the central government in the mainland of China from October 2019 to December 2019.In total,1700 valid questionnaires were collected from the respondents including 816 patients with lung cancer and 884 family members of lung cancer patients.Rehabilitation education needs in patients with lung cancer and family members of lung cancer patients were investigated and analyzed.Results There was no significant difference in gender,setting and time spent in surfing the internet between lung cancer patients and their family members.However,lung cancer patients’family members were older than lung cancer patients(P<0.05).Of the 816 patients,there are more females than males(52.1%)who were mostly 41 to 50 years old(32.8%),lived in eastern area(61.8%)and seldom or never spent time on the internet(64.5%).Of 884 family members,there are more females than males(52.8%)who were mostly over 60 years old(33.6%),lived in eastern area(60.3%)and seldom or never spent time on the internet(63.6%).The top three approaches for them to get knowledge on lung cancer were internet,medical institutions and patient groups/community forums.The knowledge that they are mostly eager for is on popular science knowledge on the guidance for diagnosis and treatment,guidance and suggestions on rehabilitation,and knowledge on medicine and drugs.The platform information of rehabilitation education was mostly obtained through medical staff(40.2%)and charity organizations(23.2%)for lung cancer patients,while for patients’families members,the information was mostly obtained through medical staff(41.6%)and internet(24.1%)(all P<0.05).In terms of education form,more lung cancer patients expect to participate"lectures and doctor-patient communication"(53.1%)than patients’family members(46.4%).Analysis showed that there were significant differences in the"expected forms of rehabilitation education"between male and female patients’family members.Female patients’family members preferred expert lectures and doctor-patient communication(48.0%),popular science articles(18.0%)and patient experience sharing(13.1%),and male patients’family members preferred expert lectures and doctor-patient communication(44.6%),popular science articles(18.0%)and expert video lectures(14.6%).Conclusion It is of great significance to carry out synchronous rehabilitation education for lung cancer patients and patients’family members by adopting appropriate education forms aiming at lung cancer treatment and rehabilitation knowledge.