Lostelius Petra V, Mattebo Magdalena, Söderlund Anne, Revenäs Åsa, Thors Adolfsson Eva
Clinic for Pain Rehabilitation Västmanland, Region Västmanland, Västerås, Sweden.
School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
J Patient Rep Outcomes. 2022 Mar 28;6(1):29. doi: 10.1186/s41687-022-00436-z.
Young people in different healthcare settings are positive about using electronic patient-reported outcomes (ePROs), which are meant to increase the effectiveness and safety of interventions from the patient's perspective. Sweden offers free healthcare to young people aged 12-25 years at 275 youth health clinics (YHCs), whose goals are to strengthen young people and promote sexual, physical, and mental health. YHCs need effective ways to identify the overall picture of young people's health and health-related problems. To our knowledge, there is no ePRO for YHCs that provides an overview of young people's health from several health perspectives. The aim of this study was to explore young people's view on content and design of an ePRO to provide an overview of their health and health related problems when visiting a YHC, and their opinion on what healthcare needs to consider when using the ePRO. This was an explorative qualitative study. The participants were included from five YHCs, in different socioeconomic areas in central Sweden. Fifteen participants were included: 10 girls, three boys, and two non-binary participants with an age range of 16-22 years. Data were collected using a semi-structured interview guide and individual interviews, and inductive content analysis was performed.
One main theme, "ePRO created based on my needs is worth using" and two sub-themes, "Appealing content and design" and "Trusting healthcare", emerged. The participants wanted that an ePRO should include overall questions about mental-, physical-, and sexual health and social support. Participants also believed the ePRO must disclose the risks of self-harm or suicide. The participants noted the importance of emotional and digital security when using the ePRO and having a confidential conversation with a healthcare provider. To share health information means to trust to gain health.
The study participants' views on content and design can form the basis for designing an ePRO for young people. Their thoughts on safety and treatment in healthcare can be considered in the development process. This study is the starting point for developing an ePRO for young people at YHCs.
在不同医疗环境中的年轻人对使用电子患者报告结局（ePROs）持积极态度，ePROs旨在从患者角度提高干预措施的有效性和安全性。瑞典在275家青少年健康诊所（YHCs）为12至25岁的年轻人提供免费医疗服务，这些诊所的目标是增强年轻人的体质并促进其性健康、身体健康和心理健康。YHCs需要有效的方法来全面了解年轻人的健康状况以及与健康相关的问题。据我们所知，尚无适用于YHCs的ePRO能够从多个健康角度全面呈现年轻人的健康状况。本研究的目的是探讨年轻人对于一款ePRO的内容和设计的看法，该ePRO旨在概述他们在就诊于YHC时的健康状况以及与健康相关的问题，同时探讨他们对于医疗保健机构在使用该ePRO时需要考虑的因素的看法。这是一项探索性定性研究。参与者来自瑞典中部不同社会经济区域的五家YHCs。共纳入15名参与者：10名女孩、3名男孩和2名非二元性别参与者，年龄在16至22岁之间。使用半结构化访谈指南和个人访谈收集数据，并进行归纳性内容分析。
出现了一个主要主题，即“基于我的需求创建的ePRO值得使用”以及两个子主题，“有吸引力的内容和设计”和“信任医疗保健机构”。参与者希望ePRO应包括有关心理、身体、性健康和社会支持的总体问题。参与者还认为ePRO必须披露自我伤害或自杀的风险。参与者指出了使用ePRO以及与医疗保健提供者进行保密对话时情感和数字安全的重要性。分享健康信息意味着为了获得健康而给予信任。
研究参与者对内容和设计的看法可为设计面向年轻人的ePRO奠定基础。在开发过程中可以考虑他们对医疗保健中安全性和治疗的想法。本研究是为YHCs的年轻人开发ePRO的起点。
