Dean Samera, Mathers Jonathan M, Calvert Melanie, Kyte Derek G, Conroy Dolores, Folkard Annie, Southworth Sue, Murray Philip I, Denniston Alastair K
Health Education England (West Midlands), Birmingham, UK.
Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
Br J Ophthalmol. 2017 Jun;101(6):700-708. doi: 10.1136/bjophthalmol-2016-309955. Epub 2017 Apr 28.
Eye disease can be devastating. The most feared impact is sight loss, but in a number of ophthalmic conditions, there can be wide-ranging systemic, psychological, emotional and social effects of both the disease and its treatment. External tests of visual function, such as visual acuity, are inadequate to understand the overall impact of ophthalmic disease on a patient's functional vision or daily life. This can lead to a discordance between the patient's priorities and perspective on the one hand and the efforts of clinicians and other stakeholders on the other hand. In this review, we discuss how the patient is uniquely placed to understand the impact of the disease and can use that position to transform ophthalmic care at the individual and collective level, from research to care delivery. We highlight how the "patient voice" can contribute to key areas, including priority setting in the research agenda, communicating the wide-ranging impact of disease and its treatment as assessed through qualitative research, identifying the outcome measures that matter to the patient through core outcome set development and reporting these outcomes through appropriate patient-reported outcome measures. We also consider the increasing power of the patient voice on health institutions, ranging from broadcasting an individual's experience of care he/she has received to patient societies influencing future health policy. Finally, we reflect on the challenges that need to be overcome for the patient voice to increasingly influence and improve the delivery of eye care in the future.
眼部疾病可能具有毁灭性。最令人担忧的影响是视力丧失，但在许多眼科疾病中，疾病及其治疗可能会产生广泛的全身、心理、情感和社会影响。视觉功能的外部测试，如视力测试，不足以了解眼科疾病对患者功能性视力或日常生活的总体影响。这可能导致患者的优先事项和观点与临床医生及其他利益相关者的努力之间出现不一致。在本综述中，我们讨论了患者如何处于独特的位置来理解疾病的影响，并如何利用这一位置在从研究到护理提供的个人和集体层面上改变眼科护理。我们强调“患者声音”如何能在关键领域做出贡献，包括在研究议程中确定优先事项、通过定性研究传达疾病及其治疗的广泛影响、通过核心结局集的制定确定对患者重要的结局指标，并通过适当的患者报告结局指标报告这些结局。我们还考虑了患者声音对卫生机构日益增强的影响力，从传播个人接受护理的经历到患者团体影响未来的卫生政策。最后，我们思考了为使患者声音在未来越来越多地影响和改善眼科护理的提供而需要克服的挑战。
