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首页> 外文期刊>BMC Pulmonary Medicine >Data driven decision making to characterize clinical personas of parents of children with cystic fibrosis: a mixed methods study
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Data driven decision making to characterize clinical personas of parents of children with cystic fibrosis: a mixed methods study

机译：数据驱动决策，以囊性纤维化患儿父母的临床题目：混合方法研究

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Beginning at a young age, children with cystic fibrosis (CF) embark on demanding care regimens that pose challenges to parents. We examined the extent to which clinical, demographic and psychosocial features inform patterns of adherence to pulmonary therapies and how these patterns can be used to develop clinical personas, defined as aspects of adherence barriers that are presented by parents and/or perceived by clinicians, in order to enhance personalized CF care delivery. We undertook an explanatory sequential mixed-methods study consisting of i) multivariate clustering to create clusters corresponding to parental adherence patterns (quantitative phase); ii) parental participant interviews to create clinical personas interpreted from clustering (qualitative phase). Clinical, demographic and psychosocial features were used in supervised clustering against clinical endpoints, which included adherence to airway clearance and aerosolized medications and self-efficacy score, which was used as a feature for modeling adherence. Clinical implications were developed for each persona by combing quantitative and qualitative data (integration phase). The quantitative phase showed that the 87 parent participants were segmented into three distinct patterns of adherence based on use of aerosolized medication and practice of airway clearance. Patterns were primarily influenced by self-efficacy, distance to CF care center and child BMI percentile. The two key patterns that emerged for the self-efficacy model were most heavily influenced by distance to CF care center and child BMI percentile. Eight clinical personas were developed in the qualitative phase from parent and clinician participant feedback of latent components from these models. Findings from the integration phase include recommendations to overcome specific challenges with maintaining treatment regimens and increasing support from social networks. Adherence patterns from multivariate models and resulting parent personas with their corresponding clinical implications have utility as clinical decision support tools and capabilities for tailoring intervention study designs that promote adherence.
机译：从年轻的时候开始，患有囊性纤维化的孩子（CF）踏上苛刻的护理方案对父母构成挑战。我们研究了临床，人口和心理社会功能的程度，可以向肺疗法提供粘附模式以及这些模式如何用于开发临床角色，定义为父母和/或临床医生所呈递的粘附障碍的方面为了增强个性化的CF护理送货。我们认定由I）多变量聚类组成的解释性序贯混合方法研究，以创建与父母粘附模式（定量相）对应的簇; ii）父母参与者面试，以创建从聚类（定性阶段）解释的临床角色。临床，人口统计学和心理社会特征用于对临床终点的监督聚类，包括依从气道清除和雾化药物和自我效能评分，这被用作建模依从性的特征。通过梳理定量和定性数据（集成阶段）来开发每个角色的临床意义。定量相表明，基于使用雾化药物和气道间隙实践，将87个父母参与者分割成三种不同的粘附模式。模式主要受自我效能的影响，与CF Care中心和儿童BMI百分位数的距离。对于自我效能模型出现的两个关键模式受到与CF Care Center和Child BMI百分比的距离的影响最大。在这些模型的父母和临床医生参与者的定性阶段开发了八个临床角色。整合阶段的调查结果包括克服特定挑战的建议，以维持治疗方案以及增加社交网络的支持。来自多变量模型的粘附模式和具有相应临床意义的父母的父母人物具有效用作为临床决策支持工具和能力，用于衡量促进遵守的干预研究设计。

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