“The patient is speaking”: discovering the patient voice in ophthalmology

Abstract

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.

Vision Loss from Atypical Optic Neuritis: Patient and Physician Perspectives

“…The patient outlines how the impacts of optic neuritis and its treatment extend far beyond the limited visual function measures and OCT imaging parameters monitored in clinic to encroach upon many different domains of quality of life. There is growing recognition of the value of, and need for, patient-reported outcome measures in medicine and ophthalmology [4,5]. Few tools have been developed to date for neuro-ophthalmology, and optic neuritis specifically.…”

ANDROMEDA – Eine Untersuchung von Einflussfaktoren auf die Adhärenz von Patienten mit neovaskulärer altersabhängiger Makuladegeneration mithilfe des neu konzipierten Patientenfragebogens LAF-IVT

“…Augenerkrankungen, die mit einem Sehverlust einhergehen, sind mit erheblichen Einschränkungen der emotionalen, psychischen und sozialen Lebensqualität der Betroffenen verbunden [1]. Von Patienten erlebte Symptome, die wahrgenommene Belastung durch eine Behandlung und schließlich auch die Veränderung der Lebensqualität beeinflussen das Patientenverhalten sowie die Therapieumsetzung.…”

Soft Skill Development in Ophthalmology and its Importance to Aspiring Canadian Medical Students

“…In ophthalmology, traditional clinical outcome measures (COMs) -like visual acuity and intraocular pressure -do not always correlate with patient-reported outcome measures (PROMs) -such as functionality during sight-dependent daily activities like driving or reading (43). Both clinical research and routine clinical practice are increasingly using PROMs, as they capture patients' experiences better than COMs (43). Eye care providers must understand how patients value sight and their expectations of care.…”