RESUMEN
The impact of visual impairment in the context of sickle cell disease is poorly understood. Despite the significant advancements over the past three decades in retinal imaging and in the understanding of molecular mechanisms that drive retinal neovascularization, there has been little improvement in the management of proliferative sickle cell retinopathy. This article is co-authored by a patient impacted by proliferative sickle cell retinopathy. She highlights her personal experience of sight loss from proliferative sickle cell retinopathy and the impact on her daily life and mental health. Subsequent to diagnosis and management of proliferative sickle cell retinopathy, she continues to live with irreversible sight loss and provides crucial insight from a patient's perspective into the broad lack of high-quality educational materials online and lack of understanding of the disease within the clinical community. This article aims to provide a strong narrative to emphasize the need for further qualitative and quantitative research in this area, to bring about the holistic step-change required to improve visual outcomes and eyecare for people with sickle cell disease.
RESUMEN
INTRODUCTION: Sickle cell disease (SCD) is one of the most common genetic disorders in the UK, with over 15 000 people affected. Proliferative sickle cell retinopathy (SCR) is a well-described complication of SCD and can result in significant sight loss, although the prevalence in the UK is not currently known. There are currently no national screening guidelines for SCR, with wide variations in the management of the condition across the UK. METHODS AND ANALYSIS: The Sickle Eye Project is an epidemiological, cross-sectional, non-interventional study to determine the prevalence of visual impairment due to SCR and/or maculopathy in the UK. Haematologists in at least 16 geographically dispersed hospitals in the UK linked to participating eye clinics will offer study participation to consecutive patients meeting the inclusion criteria attending the sickle cell clinic. The following study procedures will be performed: (a) best corrected visual acuity with habitual correction and pinhole, (b) dilated slit lamp biomicroscopy and funduscopy, (c) optical coherence tomography (OCT), (d) OCT angiography where available, (e) ultrawide fundus photography, (f) National Eye Institute Visual Function Questionnaire-25 and (g) acceptability of retinal screening questionnaire. The primary outcome is the proportion of people with SCD with visual impairment defined as logarithm of the minimum angle of resolution ≥0.3 in at least one eye. Secondary outcomes include the prevalence of each stage of SCR and presence of maculopathy by age and genotype; correlation of stage of SCR and maculopathy to severity of SCD; the impact of SCR and presence of maculopathy on vision-related quality of life; and the acceptability to patients of routine retinal imaging for SCR and maculopathy. ETHICS AND DISSEMINATION: Ethical approval was obtained from the South Central-Oxford A Research Ethics Committee (REC 23/SC/0363). Findings will be reported through academic journals in ophthalmology and haematology.
Asunto(s)
Anemia de Células Falciformes , Degeneración Macular , Enfermedades de la Retina , Baja Visión , Humanos , Prevalencia , Estudios Transversales , Calidad de Vida , Enfermedades de la Retina/epidemiología , Enfermedades de la Retina/etiología , Anemia de Células Falciformes/complicaciones , Anemia de Células Falciformes/epidemiología , Anemia de Células Falciformes/diagnóstico , Degeneración Macular/etiología , Degeneración Macular/complicaciones , Baja Visión/complicaciones , Tomografía de Coherencia Óptica/métodos , Reino Unido/epidemiologíaRESUMEN
Implicit racial bias is a persistent and pervasive challenge within healthcare education and training settings. A recent systematic review reported that 84% of included studies (31 out of 37) showed evidence of slight to strong pro-white or light skin tone bias amongst healthcare students and professionals. However, there remains a need to improve understanding about its impact on healthcare students and how they can be better supported. This narrative review provides an overview of current evidence regarding the role of implicit racial bias within healthcare education, considering trends, factors that contribute to bias, and possible interventions. Current evidence suggests that biases held by students remain consistent and may increase during healthcare education. Sources that contribute to the formation and maintenance of implicit racial bias include peers, educators, the curriculum, and placements within healthcare settings. Experiences of implicit racial bias can lead to psychosomatic symptoms, high attrition rates, and reduced diversity within the healthcare workforce. Interventions to address implicit racial bias include an organizational commitment to reducing bias in hiring, retention, and promotion processes, and by addressing misrepresentation of race in the curriculum. We conclude that future research should identify, discuss, and critically reflect on how implicit racial biases are enacted and sustained through the hidden curriculum and can have detrimental consequences for racial and ethnic minority healthcare students.