Steno Diabetes Center Aarhus, Aarhus University Hospital, Aarhus, Denmark.
Department of Clinical Medicine, Aarhus University, Aarhus, Denmark.
J Patient Rep Outcomes. 2023 Mar 2;7(1):20. doi: 10.1186/s41687-023-00564-0.
Within pediatric health care services, Patient-reported Outcomes (PROs) regarding the patient's health status are mainly used for research purposes in a chronic care setting. However, PROs are also applied in clinical settings in the routine care of children and adolescents with chronic health conditions. PROs have the potential to involve patients because they 'place the patient at the center' of his or her treatment. The investigation of how PROs are used in the treatment of children and adolescents and how this use can influence the involvement of these patients is still limited. The aim of this study was to investigate how children and adolescents with type 1 diabetes (T1D) experience the use of PROs in their treatment with a focus on the experience of involvement.
Employing Interpretive Description, 20 semi-structured interviews were conducted with children and adolescents with T1D. The analysis revealed four themes related to the use of PROs: Making room for conversation, Applying PROs under the right circumstances, Questionnaire structure and content, and Becoming partners in health care.
The results clarify that, to some extent, PROs fulfill the potential they promise, including patient-centered communication, detection of unrecognized problems, a strengthened patient-clinician (and parent-clinician) partnership, and increased patient self-reflection. However, adjustments and improvements are needed if the potential of PROs is to be fully achieved in the treatment of children and adolescents.
在儿科医疗保健服务中，患者报告的结果（PROs）主要用于慢性护理环境中的研究目的。然而，PROs 也应用于儿童和青少年慢性病常规护理的临床环境中。PROs 有可能涉及患者，因为它们将患者置于治疗的“中心”。对于 PROs 在儿童和青少年治疗中的使用方式以及这种使用方式如何影响这些患者的参与程度的研究仍然有限。本研究的目的是调查 1 型糖尿病（T1D）患儿对 PROs 在其治疗中的使用体验，重点是参与体验。
采用解释性描述方法，对 20 名患有 T1D 的儿童和青少年进行了半结构化访谈。分析揭示了与 PROs 使用相关的四个主题：为对话创造空间、在适当的情况下应用 PROs、问卷结构和内容以及成为医疗保健合作伙伴。
研究结果表明，在某种程度上，PROs 实现了它们所承诺的潜力，包括以患者为中心的沟通、发现未被识别的问题、加强医患（和家长-医患）合作关系以及增强患者自我反思。然而，如果要在儿童和青少年的治疗中充分发挥 PROs 的潜力，还需要进行调整和改进。
