Skovlund Soren Eik, Troelsen Lise H, Klim Lotte, Jakobsen Poul Erik, Ejskjaer Niels
Department of Clinical Medicine, Aalborg University, Sønderskovvej 15, 9000, Aalborg, Denmark.
Department of Endocrinology, Aalborg University Hospital, Aalborg, Denmark.
Res Involv Engagem. 2021 Sep 10;7(1):62. doi: 10.1186/s40900-021-00309-7.
This study sought to utilise participatory research methods to identify the perspectives of people with diabetes regarding which diabetes outcomes were most important to them. These findings were then used to support an expert working group representing multiple health sectors and healthcare disciplines and people with diabetes to establish a core set of patient-important outcome constructs for use in routine diabetes care.
26 people with diabetes and family members were recruited through purposive sampling to participate in interviews, focus groups, voting and plenary activities in order to be part of identifying outcome constructs. Content and qualitative analysis methods were used with literature reviews to inform a national multi-stakeholder consensus process for a core set of person-centred diabetes outcome constructs to be used in routine diabetes care across health care settings.
21 people with diabetes and 5 family members representing type 1 and 2 diabetes and a range of age groups, treatment regimens and disease burden identified the following patient-reported outcome constructs as an important supplement to clinical indicators for outcome assessment in routine diabetes care: self-rated health, psychological well-being, diabetes related emotional distress and quality of life, symptom distress, treatment burden, blood sugar regulation and hypoglycemia burden, confidence in self-management and confidence in access to person-centred care and support. Consensus was reached by a national multi-stakeholder expert group to adopt measures of these constructs as a national core diabetes outcome set for use in routine value-based diabetes care.
We found that patient-reported outcome (PRO) constructs and clinical indicators are needed in core diabetes outcome sets to evaluate outcomes of diabetes care which reflect key needs and priorities of people with diabetes. The incorporation of patient-reported outcome constructs should be considered complementary to clinical indicators in multi-stakeholder value-based health care strategies. We found participatory research methods were useful in facilitating the identification of a core prioritised set of diabetes outcome constructs for routine value-based diabetes care. The use of our method for involving patients may be useful for similar efforts in other disease areas aimed at defining suitable outcomes of person-centred value-based care. Future research should focus on developing acceptable and psychometrically valid measurement instruments to evaluate these outcome constructs as part of routine diabetes care.
本研究旨在运用参与式研究方法，确定糖尿病患者对于哪些糖尿病结局对他们最为重要的看法。这些研究结果随后被用于支持一个代表多个卫生部门、医疗保健学科以及糖尿病患者的专家工作组，以建立一套用于常规糖尿病护理的患者重要结局指标核心集。
通过目的抽样招募了26名糖尿病患者及其家庭成员，参与访谈、焦点小组、投票和全体会议活动，以参与确定结局指标。运用内容分析和定性分析方法，并结合文献综述，为一项全国多利益相关方共识过程提供信息，以确定一套用于跨卫生保健环境的常规糖尿病护理的以患者为中心的糖尿病结局指标核心集。
21名糖尿病患者和5名家庭成员，代表1型和2型糖尿病以及一系列年龄组、治疗方案和疾病负担，确定了以下患者报告的结局指标，作为常规糖尿病护理中结局评估临床指标的重要补充：自评健康状况、心理健康、糖尿病相关情绪困扰和生活质量、症状困扰、治疗负担、血糖调节和低血糖负担、自我管理信心以及获得以患者为中心的护理和支持的信心。一个全国多利益相关方专家小组达成共识，采用这些指标的测量方法作为全国核心糖尿病结局集，用于基于价值的常规糖尿病护理。
我们发现，在核心糖尿病结局集中需要患者报告的结局指标（PRO）和临床指标，以评估反映糖尿病患者关键需求和优先事项的糖尿病护理结局。在基于价值的多利益相关方卫生保健策略中，纳入患者报告的结局指标应被视为对临床指标的补充。我们发现参与式研究方法有助于确定一套用于基于价值的常规糖尿病护理的核心优先糖尿病结局指标。在其他旨在确定以患者为中心的基于价值的护理合适结局的疾病领域，采用我们这种让患者参与的方法可能会有所帮助。未来的研究应侧重于开发可接受且心理测量有效的测量工具，以评估这些结局指标，作为常规糖尿病护理的一部分。
