背景:在儿科医疗保健服务中,关于患者健康状况的患者报告结果(PRO)主要用于慢性护理环境中的研究目的。然而,PROs还应用于临床环境中,对患有慢性健康状况的儿童和青少年进行常规护理。PROs有可能涉及患者,因为他们“将患者置于他或她的治疗中心”。关于PROs如何用于儿童和青少年治疗以及这种使用如何影响这些患者的参与的研究仍然有限。这项研究的目的是调查1型糖尿病(T1D)的儿童和青少年如何在治疗中使用PRO,重点是参与的经验。
结果:采用解释性描述,对患有T1D的儿童和青少年进行了20次半结构化访谈。分析揭示了与使用PRO相关的四个主题:为对话腾出空间,在适当的情况下应用PRO,问卷结构和内容,成为医疗保健的合作伙伴。
结论:结果阐明,在某种程度上,专业人士履行他们承诺的潜力,包括以患者为中心的沟通,检测未识别的问题,加强患者-临床医生(和家长-临床医生)伙伴关系,增加病人的自我反省。然而,如果要充分发挥PRO在儿童和青少年治疗中的潜力,就需要进行调整和改进。
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.