痛风患者的健康素养:一项关于东北地区中青年患者的质性研究

Health Literacy in Young and Middle-aged Gout Patients in Northeastern China:a Qualitative Study

背景痛风是一种代谢性疾病,可以并发肾、心脑血管等多器官疾病,目前痛风发病和预后的影响因素已经得到揭示,但鲜有通过质性研究方法全面评估痛风患者的疾病认知和健康素养状态。目的探讨东北地区中青年痛风患者的健康素养,并了解痛风患者的一般感知能力及知识需求状况,为增强我国痛风患者的健康素养水平,改善其自身管理能力、提高痛风患者的生活质量提供理论依据。方法招募2017年3月-2018年3月于大庆油田总医院、大庆市人民医院、大庆市第五医院3家医院确诊为痛风的中青年患者,信息饱和后停止招募,共招募13例患者。采用非结构式与半结构式访谈相结合的方式对患者资料进行收集,采用Colaizzi的现象学资料分析方法进行分析。结果对访谈资料进行分析,提炼如下主题:痛风患者的疾病感知能力〔包括对痛风的认知及知晓情况较差;严重的疼痛可影响痛风患者的生活质量;自我感知导致疾病发作或加重的原因为饮食习惯及生活方式等〕、就诊状况及行为(包括首次发病对疾病认识缺乏;就医体验不良)、痛风药物管理计划(包括药物选择依从性低、治疗方案的知晓及应对差)、痛风非药物管理计划(包括生活方式的调整、社会资源互动、疾病信息挖掘)。结论东北地区中青年痛风患者健康素养水平较低,对疾病相关信息获取途径单一,对疾病和治疗判断片面,因此不能有效进行疾病管理,阻碍医疗决策制定。提示根据需求状况、针对具体薄弱环节提升痛风患者的健康素养、提高知识水平对改善患者健康结局很有必要。

Background Gout is a metabolic disease,which may induce multi-organ disease,such as kidney and cardiovascular diseases.Influencing factors of gout incidence and prognosis have been revealed,but qualitative studies of the overall gout awareness and health literacy in gout patients are rare.Objective To explore the health literacy,general perceptions and needed gout-related information in young and middle-aged gout patients in northeastern China,providing theoretical basis for enhancing gout health literacy,self-management ability,and quality of life in such a population in China.Methods Participants were young and middle-aged patients with a definite diagnosis of gout recruited from Daqing Oil Field General Hospital,Daqing People's Hospital,and Daqing Fifth People's Hospital.13 patients were recruited after information saturation.Data of them were collected by unstructured and semi-structured interviews,and were analyzed with Colaizzi's phenomenological method of data analysis.Results The themes were refined as follows:self-perceived gout status(perceptions and awareness of gout were poor,severe pain would affect the quality of life of patients with gout,self-perceived causes of gout onset and aggravation were Eating habits and lifestyle,etc),heath-seeking behaviors and experience(including lack of understanding of gout at the initial onset,poor heath-seeking experience,and so on),pharmacological management plan of gout(low compliance of drug selection,awareness of treatment plan and poor response),non-pharmacological management plan of gout(modification of life style,interactive social resources of gout,and gout information mining and other interactive and critical health literacy of gout).Conclusion Due to relatively low health literacy level,very limited ways for gaining gout-related knowledge,onesided judgment of gout conditions and treatment,young and middle-aged gout patients in northeastern China are inefficient in dealing with gout,which in turn hinders the medical decision-making.To improve the prognosis,it is necessary to enhance the health literacy and understanding of gout of the patients according to their needs and specific weak aspects.