Barriers to Quality Neuro-Ophthalmology Care
According to the World Health Organization (WHO), in half of the 2.2 billion people in the world with vision impairment, the situation may have been preventable. In the United States, vision loss is considered one of the top ten causes of disability (Saaddine, Narayan et al. 2003). Neuro-ophthalmology and other specialties in medicine experience barriers to quality care that may be difficult to identify and resolve. These barriers to care are present not only during care itself but also in seeking and following up with care. Many of these barriers tie into the others and form interconnected webs of issues that are difficult to elucidate and untangle. This article serves to illustrate prevalent barriers in play and identify feasible solutions for mitigation.
Barriers to Care
One major barrier affecting multiple aspects of care includes providing timely and quality neuro-ophthalmology consultation, is the limited number of providers available in the field. Ophthalmology and neurology residents may not pursue neuro-ophthalmology as a subspecialty career because of the perceived difficulty of the specialty, salary prospects, lack of surgery, and academy-based practice (Frohman 2005). Due to this shortage of providers, the patients that need care struggle to find, receive, and follow up for the care in a timely manner.
Social determinants of health overwhelmingly influence a patient's relationship with the healthcare field and tie into all three steps of healthcare delivery. The social determinants of health include economic stability, access to healthcare, built environment, social context, and education (Braveman and Gottlieb 2014). Obstacles in any one of the five categories tend to prevent a patient from pursuing, receiving, and following up with quality care.
Underserved communities are disproportionately affected by various social determinants of health that prevent access to timely care. Structural barriers, such as transportation and proximity of providers, and cognitive barriers, such as difficulty understanding medical information and poor treatment in healthcare settings, all play a major role in discouraging patients from actively seeking out care (de Heer, Balcazar et al. 2013). Research has shown that patients with lower health literacy have a threefold increase in poor health outcomes due to a lack of utilization of healthcare resources (Dewalt, Berkman et al. 2004). In the general public, there is also widespread lack of knowledge regarding eye health and the importance of prompt care with vision impairment. In a recent study, 50% of the sample population noted a perceived lack of need as a barrier to pursuing care (Ahmad, Zwi et al. 2015). For example, in the elderly population, there is a common misconception that vision loss with aging is a physiological process that has no treatment (Ahmad, Zwi et al. 2015). In one study, a significant proportion of the sample population showed mistrust of the healthcare system from past experiences, in which they were either mistreated, spent excessive time waiting, or had poor outcomes.
Additionally, referrals to neuro-ophthalmologists can create problems that contribute to a delay in access to proper care. In a recent study, it was found that patients saw a median of two doctors before a neuro-ophthalmologist. Moreover, 34% of those patients saw multiple providers within the same specialty before receiving a neuro-ophthalmologist referral, and unnecessary tests were done on 19% of the sample group (Stunkel, Mackay et al. 2020). In another study, overdiagnosis of idiopathic intracranial hypertension in 40% of patients resulted in unnecessary and invasive testing (Chung and Custer 2017). Overall, the excessive number of primary appointments and unindicated tests, merely for a referral, added to the fiscal burden of the patients, which is a prevalent reason for further delay in seeking care. After referral, the median time to the actual consult was 34 days, with a peak at one week for urgent requests and thirteen weeks for routine requests (Stunkel, Mackay et al. 2020). In addition, the subspecialty provider scarcity causes additional burden on patients who have to travel large distances for care. In this same study, it was found that the median distance traveled by patients seeking care was 36.5 miles (Stunkel, Mackay et al. 2020). Presumably, the wait and travel times deter patients from seeking neuro-ophthalmology care.
Other barriers to quality care during consults include misdiagnosis before referral, errors in image performance or interpretation, challenges of patient safety, time constraints, and lack of necessary equipment. Misdiagnoses and lack of indicated prudent information in referrals to a neuro-ophthalmologist heavily contribute to issues with diagnostic error and patient safety. In the study done by Stunkel, 40% of the patients referred were misdiagnosed, 49% were partially misdiagnosed, and 7% had unknown diagnoses (Stunkel, Mackay et al. 2020). Knowledge of the specific criteria required to make many neuro-ophthalmology diagnoses is not widespread amongst primary care – or even other ophthalmology or neurology – specialties. Consequently, patients are referred with a routine request for appointment, lacking the urgency they truly need. As a result, prompt care is delayed, and visual impairment is likely to follow. Patients can carry a misdiagnosis for an extended amount of time without a neuro-ophthalmology consult and may undergo unnecessary treatment that is harmful in the long term (Stunkel, Newman-Toker et al. 2021).
Another study done by Stunkel identified that the majority of the diagnostic errors came from physician performance, interpretations of the eye exam or imaging, differential generation, cognitive biases during visits, and premature closure of diagnostic evaluation (Stunkel, Newman-Toker et al. 2021). McClelland and Van Stavern showed a misdiagnosis rate of up to 69% before neuro-ophthalmology consultation, most commonly due to image analysis (McClelland, Van Stavern et al. 2012). In the majority of these cases, better communication between the physician and radiologist could have prevented the errors. Research done on the utilization of neuroimaging for diagnosis showed that the errors were subdivided into prescription errors and interpretive errors (Wolintz, Trobe et al. 2000). The prescriptive errors included failure to correctly apply either a dedicated study with a specific focus or a non-dedicated study, omission of IV contrast, and omission of special sequences in the imaging. Interpretive errors consisted of failure to detect lesions due to misleading clinical information and rejection of diagnoses due to the absence of expected imaging results. Thoughtful communication between the provider and the radiologist regarding the case and expectations of the imaging would significantly reduce the errors in neuro-ophthalmology imaging.
Patient safety errors are common in all fields of healthcare, including neuro-ophthalmology. Limited advances with patient safety in neuro-ophthalmology are noted, which can be attributed to various reasons, including provider resistance, inadequate higher-level leadership, and fiscal concerns about the implementation of redefined models. In general, patient safety is seen as inefficient and threatening to a hospital’s revenue stream. However, there have been multiple studies showing the opposite effect in healthcare organizations. In many cases, patient safety measures improve efficiency, increase provider satisfaction and retention, and lead to a general reduction in complications with surgery and consults, resulting in fewer lawsuits and other legal burdens for a hospital (Chung and Custer 2017).
The lack of sufficient providers in neuro-ophthalmology also affects the quality of care provided during consults. Due to the sheer volume of patients waiting for a consultation, there is heightened pressure to see an increased number of patients. The time spent in clinic must be balanced with teaching and educational responsibilities for many academic physicians which further adds to the time and volume pressure. (Frohman 2008).
Social determinants of health are vital when considering follow-up for a disease. Specifically, in neuro-ophthalmology, patients might have a higher co-pay, need to travel longer distances, require an escort, and actively watch for signs of progression of the disease. Carefully working with a patient to determine the barriers they might face is vital to maintain quality and timely care. Research has found that patients do not understand the severity of their disease and are under a pretense of satisfactory eye health (Lee, Sathyan et al. 2008). Due to this, patients might not adhere to the medication regimen discussed during the appointment. This study has also shown that a prevalent issue is a lack of education on various aspects of their disease, including signs of progression. The lack of patient education about their disease could result in failure to detect important signs of visual impairment that would need a prompt neuro-ophthalmology consult. Timely referral to neuro-ophthalmology is vital to prevent permanent visual impairment in patients.
Recruiting medical professionals to pursue a career in neuro-ophthalmology would be the one way to mitigate the majority of the barriers discussed. Systemic changes to the current billing, coding, and reimbursement for cognitive specialties like neuro-ophthalmology may be necessary to reduce the time and volume constraints of clinical care. Frohman discussed many feasible ways to reform the current processes, but multiple organizations need to join the initiative for the improvement of the quality of care in neuro-ophthalmology (Frohman, 2005). Telehealth is another potential countermeasure that has gradually become a more important tool for reducing barriers to neuro-ophthalmology care. Not only does it facilitate access to the limited providers in the field, but it allows for triage of cases which might improve the outcomes of consults. Establishing a hybrid model of care can allow both the provider and patient to better utilize their available resources. Encouraging leaders in patient safety and educating administration on the benefits of safety models with recommendations from a physician-oriented perspective will go a long way in improving patient safety. Immediate changes that a physician can implement include involving the family in patient care and treatment, along with practicing open and honest communication about potential obstacles during care. Finally, it is vital to implement measures that improve the patients’ and first-line providers’ knowledge of neuro-ophthalmology diseases, especially those that can lead to permanent vision loss. Providing feedback on referrals would prove useful for future consult requests and prevent the repetition of similar mistakes. This can be done through lectures from local neuro-ophthalmologists, pre-recorded lectures or pre-made slides on algorithms for certain diseases, or utilization of virtual case-based learning platforms for neuro-ophthalmology cases.
The importance of neuro-ophthalmology in the delivery of complex and high acuity care in the health care system is well established. Structural changes to the healthcare system may be required in the future to reduce the burdens of time and cost and to provide access to quality and timely care.
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