Ricci Laetitia, Buzzi Marie, Kivits Joelle, Rat Anne-Christine
CIC, Epidémiologie Clinique, CHRU-Nancy, INSERM, Université de Lorraine, Nancy, F-54000, France.
APEMAC, équipe MICS, Université de Lorraine, Nancy, F-54000, France.
Patient Prefer Adherence. 2023 Sep 1;17:2175-2186. doi: 10.2147/PPA.S414126. eCollection 2023.
According to the Centre for Disease Control and Prevention, "Self-management education (SME) refers to programs that help people who have ongoing health conditions learn how to live life to the fullest". Most studies to date have focused on SME outcomes, such as the acquisition of predefined knowledge or skills or quality of life. However, no study has yet investigated patients' satisfaction with SMEs. The aim of the present study was therefore to explore participants' subjective appreciation of SME programs using qualitative methods and formulate propositions based on patients' preferences to improve ultimately clinical outcomes.
Twenty-five participants from five French SME programs to conduct focus groups were recruited. An inductive approach using grounded theory as an overall methodology orientation for the thematic analysis process has been followed. The study was reported in compliance with the consolidated criteria for reporting qualitative research criteria (COREQ).
Patients expressed great satisfaction concerning the effective delivery of SME sessions. They appreciated the considerations for their concerns and needs, the adaptation of sessions' content to their interests and questions, and learning to take care of themselves. Moreover, patients had a positive opinion on the quality of their relationship with health care providers. However, the major point of improvement of SMEs was the opportunity to repeat the program if needed, as this opportunity was not offered. This consideration was particularly salient when patients did not consider themselves autonomous for disease management at the end of the program, ie, when they had low levels of perceived self-efficacy.
While patients expressed great satisfaction regarding SME programs, our results suggest that some changes might be needed to make the endpoint of SME interventions coincide with the patient's perception of self-efficacy in disease self-management and ultimately improve clinical outcomes.
根据疾病控制与预防中心的定义，“自我管理教育（SME）是指帮助患有持续性健康问题的人们学习如何充分生活的项目”。迄今为止，大多数研究都集中在自我管理教育的结果上，比如获取预先定义的知识或技能，或者生活质量。然而，尚无研究调查患者对自我管理教育项目的满意度。因此，本研究的目的是采用定性方法探索参与者对自我管理教育项目的主观评价，并根据患者的偏好提出建议，以最终改善临床结果。
招募了来自五个法国自我管理教育项目的25名参与者进行焦点小组访谈。采用归纳法，将扎根理论作为主题分析过程的总体方法论导向。本研究按照定性研究报告综合标准（COREQ）进行报告。
患者对自我管理教育课程的有效开展表示非常满意。他们赞赏对其关切和需求的关注、课程内容根据其兴趣和问题进行的调整，以及学会照顾自己。此外，患者对与医护人员关系的质量持积极看法。然而，自我管理教育项目的主要改进点是在需要时重复该项目的机会，因为目前并未提供这一机会。当患者在项目结束时认为自己在疾病管理方面缺乏自主性，即自我效能感较低时，这一考量尤为突出。
虽然患者对自我管理教育项目表示非常满意，但我们的结果表明，可能需要做出一些改变，以使自我管理教育干预的终点与患者在疾病自我管理中的自我效能感认知相契合，并最终改善临床结果。
