Mejdahl Caroline Trillingsgaard, Schougaard Liv Marit Valen, Hjollund Niels Henrik, Riiskjær Erik, Thorne Sally, Lomborg Kirsten
1Department of Public Health, Aarhus University, Bartholins Allé 2, DK-8000 Aarhus, Denmark.
2The Research Program in Patient Involvement, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, DK-8200 Aarhus, Denmark.
J Patient Rep Outcomes. 2018 Sep 5;2:38. doi: 10.1186/s41687-018-0067-0. eCollection 2017.
There is an increasing focus on the use of patient-reported outcome (PRO) measures to improve the quality and effectiveness of health care. PRO-based follow-up is a new model of service delivery, where the patient's PRO measures are used as the very basis for outpatient follow-up.
This study aimed to explore how patients with epilepsy experience the use of PRO-based follow-up in three outpatient clinics in the Central Denmark Region. We also sought to explain how these experiences relate to self-management.
Interpretive description was the methodological approach. We conducted in-depth individual interviews with 29 patients referred to PRO-based follow-up, each of whom had completed at least two PRO questionnaires. Participants were sampled based on purposive and theoretical sampling.
PRO-based follow-up may support patients' self-management by a) increasing awareness of psychosocial problems, b) improving communication, c) increasing understanding of symptoms, d) facilitating change in health behavior and e) strengthening autonomy. Inhibitors for PRO measures as a means of self-management support were identified as a) feelings of rejection and disconnection, b) incomprehension of purpose of PRO-based follow-up, c) PRO measures being too standardized and negative and d) lack of confidence in own ability to assess PRO questionnaires.
The findings demonstrate broad variation in the influences of PRO measures on patient's self-management in life with epilepsy. Sense of ownership may explain this variation. We suggest supplementary clinical initiatives in order to enhance the benefits from PRO-based follow-up, particularly on how patients are allocated to this health care service.
越来越多的人关注使用患者报告结局（PRO）指标来提高医疗保健的质量和效果。基于PRO的随访是一种新的服务提供模式，其中患者的PRO指标被用作门诊随访的基础。
本研究旨在探讨癫痫患者在丹麦中部地区的三家门诊诊所中如何体验基于PRO的随访。我们还试图解释这些体验与自我管理之间的关系。
采用解释性描述方法。我们对29名接受基于PRO随访的患者进行了深入的个人访谈，每位患者至少完成了两份PRO问卷。参与者基于目的抽样和理论抽样进行选取。
基于PRO的随访可以通过以下方式支持患者的自我管理：a）提高对心理社会问题的认识，b）改善沟通，c）增加对症状的理解，d）促进健康行为的改变，e）增强自主性。作为自我管理支持手段的PRO指标的阻碍因素被确定为：a）被拒绝和脱节的感觉，b）对基于PRO的随访目的的不理解，c）PRO指标过于标准化和负面，d）对自己评估PRO问卷能力缺乏信心。
研究结果表明，PRO指标对癫痫患者生活中的自我管理的影响存在广泛差异。主人翁意识可能解释了这种差异。我们建议采取补充性临床举措，以增强基于PRO的随访的益处，特别是在患者如何被分配到这种医疗服务方面。
