临床管理指南(CMG)是专业人员使用的患者护理决策支持工具,病人,和家庭照顾者。由于临床专家开发了许多CMG,他们的技术语言阻碍了非医疗利益相关者的理解和获取。此外,受影响个人及其家人的意见往往没有纳入治疗指南。我们开发了一种适当的方法来解决家庭和专业利益相关者对CMG的需求和偏好,最近开发的治疗先天性糖基化疾病(CDG)的方案,一个罕见的代谢性疾病家族。我们使用CDG群落和磷酸线粒体变位酶2(PMM2)-CDGCMG作为试验来测试和实施我们的方法。
我们听取了89个PMM2-CDG家族和35个专业利益相关者的意见,并通过电子问卷量化了他们与CMG相关的需求和偏好。大多数家庭和专业人士认为CMG相关(86.5%和94.3%,分别),和有价值(84.3%和94.3%,分别)在CDG管理中。最明显的挑战是缺乏CMG意识(50.6%的家庭)和缺乏普通语言CMG(39.3%的专业人员)。和谐地,在家庭中,建议最多的解决方案是让他们参与CMG开发(55.1%),而专业人士建议调整CMG,以包括简单的语言(71.4%)。基于这些结果,创建了基于健康素养原则的参与性框架,以提高CMG的理解和可及性。输出是六种互补的CMG相关资源,这些资源不同地适应了CDG社区的需求和偏好,以普通语言PMM2-CDGCMG为主要结果。此外,与会者制定了分配计划,以确保更广泛地获得所有资源。
这种赋权,以人为本的方法论加速了CMG的开发和对所有利益相关者的可访问性,最终改善患有特定疾病的个体的生活质量,并提高应用于其他临床指南的可能性。
Clinical management
guidelines (CMGs) are decision support tools for patient care used by professionals, patients, and family caregivers. Since clinical experts develop numerous CMGs, their technical language hinders comprehension and access by nonmedical stakeholders. Additionally, the views of affected individuals and their families are often not incorporated into treatment
guidelines. We developed an adequate methodology for addressing the needs and preferences of family and professional stakeholders regarding CMGs, a recently developed protocol for managing congenital disorders of glycosylation (CDG), a family of rare metabolic diseases. We used the CDG community and phosphomannomutase 2 (PMM2)-CDG CMGs as a pilot to test and implement our methodology.
We listened to 89 PMM2-CDG families and 35 professional stakeholders and quantified their CMG-related needs and preferences through an electronic questionnaire. Most families and professionals rated CMGs as relevant (86.5% and 94.3%, respectively), and valuable (84.3% and 94.3%, respectively) in CDG management. The most identified challenges were the lack of CMG awareness (50.6% of families) and the lack of plain language CMG (39.3% of professionals). Concordantly, among families, the most suggested solution was involving them in CMG development (55.1%), while professionals proposed adapting CMGs to include plain language (71.4%). Based on these results, a participatory framework built upon health literacy principles was created to improve CMG comprehension and accessibility. The outputs are six complementary CMG-related resources differentially adapted to the CDG community\'s needs and preferences, with a plain language PMM2-CDG CMG as the primary outcome. Additionally, the participants established a distribution plan to ensure wider access to all resources.
This empowering, people-centric methodology accelerates CMG development and accessibility to all stakeholders, ultimately improving the quality of life of individuals living with a specific condition and raising the possibility of application to other clinical
guidelines.