Barriers to High-Quality Neuro-Ophthalmology Care

Key points at a glance

Key points of this disease

• The absolute shortage of neuro-ophthalmology specialists is the biggest factor limiting the quality of overall medical care.
• Barriers to care exist at all three stages: initial consultation, during treatment, and follow-up.
• Social determinants of health (SDOH) hinder access to care from multiple perspectives, including economic, geographic, and educational factors.
• The misdiagnosis rate before referral to neuro-ophthalmology reaches up to 69%, and diagnostic delay can lead to visual impairment.
• Ordering errors and interpretation errors in diagnostic imaging are among the main causes of misdiagnosis.
• Telehealth is an effective tool for improving access to limited specialists.
• Patient education and enhanced training for frontline healthcare providers are essential to promote timely consultation.

1. Barriers to High-Quality Neuro-Ophthalmology Care

According to the World Health Organization (WHO), 2.2 billion people worldwide have visual impairment. Of these, up to half may have been preventable. In the United States, vision loss is among the top 10 causes of disability (Saaddine, Narayan et al. 2003).

In neuro-ophthalmology, barriers to high-quality care exist across multiple stages of clinical practice. These barriers span the phases of considering a visit, during care, and follow-up. They are also interrelated, forming a complex web that is difficult to unravel and address.

Social determinants of health (SDOH) are involved in all three stages of healthcare delivery. SDOH include the following five categories (Braveman and Gottlieb 2014).

• Economic stability: Economic foundations such as income, employment, and poverty
• Access to healthcare: Insurance coverage and physical distance to medical facilities
• Built environment: Transportation, housing, and food environment
• Social context: Race, culture, social discrimination, and community ties
• Education: Health literacy and access to health information

Barriers in any of these five areas prevent patients from seeking, receiving, and continuing high-quality care.

Q Why is there a shortage of neuro-ophthalmology specialists?

A

The main reasons include the difficulty of the specialty, salary prospects, lack of surgical procedures, and an academia-centered practice model (Frohman 2005). This has made it difficult for ophthalmology and neurology residents to choose neuro-ophthalmology as a subspecialty.

2. Types and Impact of Barriers

The main barriers are organized into three stages: from initial consultation to examination and follow-up.

Consultation Stage

Structural barriers: Lack of transportation and geographic distance from specialists hinder access to care.

Cognitive barriers: Low health literacy and past negative experiences in healthcare settings reduce motivation to seek care.

Lack of perceived need for care: 50% of survey respondents cited “not feeling the need to seek care” as a barrier (Ahmad, Zwi et al. 2015).

Over-referral and unnecessary tests: A median of two physicians were consulted before referral. Unnecessary tests were performed in 19% of cases (Stunkel, Mackay et al. 2020).

During consultation

Pre-referral misdiagnosis: 40% of referred patients were misdiagnosed, 49% partially misdiagnosed, and 7% had an unclear diagnosis (Stunkel, Mackay et al. 2020).

Neuroimaging errors: Misdiagnosis rate before consultation is up to 69%. The most common cause is image interpretation error (McClelland, Van Stavern et al. 2012).

Time and volume pressure: Shortage of specialists compresses consultation time per patient.

Patient safety challenges: Diagnostic errors arise from cognitive biases and premature closure of diagnostic evaluation (Stunkel, Newman-Toker et al. 2021).

Follow-up

High out-of-pocket costs: The cost per visit hinders regular follow-up.

Burden of long-distance travel: The median travel distance for neuro-ophthalmology visits is 36.5 miles (approximately 58.7 km) (Stunkel, Mackay et al. 2020).

Underestimation of disease severity: Patients do not understand the seriousness of their condition and do not adhere to medication regimens (Lee, Sathyan et al. 2008).

Lack of disease education: Insufficient education about the disease, including signs of progression, delays detection of important visual symptoms.

Reality of delays before referral

The median time from referral to actual consultation is 34 days. For urgent referrals, it is 1 week, and for routine referrals, the peak is 13 weeks (Stunkel, Mackay et al. 2020). This waiting time may worsen outcomes for highly urgent neuro-ophthalmic conditions.

Q How many doctors are visited before seeing a neuro-ophthalmologist?

A

Patients see a median of two physicians, and 34% consult multiple doctors within the same specialty (Stunkel, Mackay et al. 2020). This excessive referral increases patients’ financial burden and causes further delays in seeking care.

Q How serious is misdiagnosis before referral?

A

40% of referred patients receive a misdiagnosis, and 49% receive a partial misdiagnosis (Stunkel, Mackay et al. 2020). The misdiagnosis rate before neuro-ophthalmology consultation reaches up to 69%, with the most common cause being errors in image analysis (McClelland, Van Stavern et al. 2012).

3. Background Factors

Shortage of Specialists

The absolute shortage of neuro-ophthalmology specialists is a fundamental barrier that limits the overall quality of care. The following structural issues underlie this shortage (Frohman 2005).

• The specialty is highly difficult and requires a long time to master
• Because surgery is not performed, reimbursement is lower than in other specialties
• Many practice in academic settings, with limited options for private practice
• Ophthalmology and neurology residents find it difficult to choose neuro-ophthalmology as a career

As a result, patients in underserved communities are disproportionately affected. Many academic neuro-ophthalmologists must balance clinical practice with educational responsibilities, increasing pressure on clinical volume (Frohman 2008).

Relationship between the 5 SDOH categories and clinical barriers

The following table shows the impact of each SDOH category on the three stages of medical care.

SDOH category	Main stage of impact	Specific barriers
Economic stability	Visits and follow-up	Burden of consultation and transportation costs
Access to healthcare	During visits and treatment	Geographic distance to specialists
Built environment	Visits and follow-up	Lack of transportation
Social context	Visits	Medical distrust and discrimination experience
Education	Clinic visits and follow-up	Low health literacy

Patients with low health literacy have been shown to have a threefold increased risk of poor health outcomes due to underutilization of healthcare resources (Dewalt, Berkman et al. 2004). Overdiagnosis of idiopathic intracranial hypertension (IIH) occurs in 40% of patients, leading to unnecessary and invasive testing (Chung and Custer 2017).

Classification of Errors in Neuroimaging Diagnosis

Imaging diagnostic errors in neuro-ophthalmology are classified into two types (Wolintz, Trobe et al. 2000).

• Prescriptive errors: Failure to apply focused dedicated examinations, omission of intravenous (IV) contrast agents, omission of special sequences
• Interpretive errors: Failure to detect lesions due to misleading clinical information, rejection of diagnosis due to failure to obtain expected imaging results

Thoughtful communication between the referring physician and the radiologist can significantly reduce these errors.

5. Potential Solutions

Recruitment of Specialists

Reform of the reimbursement system: Changes are needed in the billing, coding, and reimbursement systems for cognitive specialties such as neuro-ophthalmology (Frohman 2005).

Participation of multiple organizations: To improve the quality of medical care, multiple healthcare organizations need to work together.

Telemedicine

Improved access: Facilitates access to limited specialists and enables triage of cases.

Hybrid model: Combines in-person and remote consultations, allowing patients and providers to effectively utilize available resources.

Current Status of Ophthalmic Telemedicine: The utilization rate of telemedicine among ophthalmologists is 9.3%, which is significantly lower than that in endocrinology (67.7%) and psychiatry (50.2%) (Patel et al.).

Promoting Patient Safety

Physician-Led Safety Model: Encourage patient safety leaders and provide education to management departments.

Family Involvement: Involving families in patient care and treatment improves safety.

Substantial effect of safety measures: Patient safety measures lead to improved efficiency, increased provider satisfaction, reduced complications, and fewer lawsuits (Chung and Custer 2017).

Enhanced Education

Education for frontline healthcare providers: Disseminating knowledge about diagnostic criteria for neuro-ophthalmic diseases directly reduces misdiagnosis rates.

Feedback on referrals: Providing feedback to referring physicians leads to more appropriate referrals in the future.

Diverse educational tools: Lectures by local neuro-ophthalmologists, recorded lectures, and virtual case-based learning platforms are effective.

For patients: When to seek care

If you experience sudden vision loss, double vision, visual field defects, or drooping eyelids, promptly see an ophthalmologist or neuro-ophthalmologist. These symptoms may indicate a neuro-ophthalmic emergency.

Q How can telemedicine reduce barriers in neuro-ophthalmology?

A

Facilitate access to limited specialists and enable case triage. A hybrid care model may allow patients to receive expert advice without long-distance travel or long waiting times. However, the current telemedicine utilization rate among ophthalmologists is only 9.3%, and institutional support is needed for widespread adoption.

7. Latest Research and Future Prospects

For Patients: Please Read

The following content is currently under research or in clinical trials and is not standard treatment available at general hospitals. It is reference information for professionals regarding future medical developments.

Expansion and achievements of telemedicine

The Technology-based Eye Care Services (TECS) program of the U.S. Department of Veterans Affairs (VA) was launched in fiscal year 2015 (FY2015) to improve eye care access for rural veterans. It has expanded to over 60 sites and 12 VA hospitals, achieving a success rate of 83.6% (as of FY2022 Q1, 51 out of 61 sites were operational). Rural and highly rural residents were 1.3 and 2.5 times more likely, respectively, to have eye diseases detected via telemedicine (VT) compared to urban residents. This achievement demonstrates that telemedicine can help reduce healthcare disparities in areas with a shortage of specialists.

The direct and indirect costs of visual impairment in the United States are estimated to be up to $134.2 billion. The widespread adoption of telemedicine for preventive interventions may also help reduce this economic burden.

Structural transformation of healthcare systems

To continuously improve the quality of medical care, structural reforms of the entire healthcare system are necessary, including reforms to the reimbursement system, expansion of specialist training programs, and systematization of communication improvements among healthcare professionals. Resolving barriers to care in neuro-ophthalmology is a challenge that requires coordinated efforts among multiple healthcare organizations, not just individual physicians (Frohman 2005).

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8. References

1. Stunkel L, Mackay DD, Bruce BB, Newman NJ, Biousse V. Referral Patterns in Neuro-Ophthalmology. Journal of Neuro-Ophthalmology. 2020;40(4):485-493. PMID: 31609835.

2. Stunkel L, Sharma RA, Mackay DD, Wilson B, Van Stavern GP, Newman NJ, Biousse V. Patient Harm Due to Diagnostic Error of Neuro-Ophthalmologic Conditions. Ophthalmology. 2021;128(9):1356-1362. PMID: 33713783.

3. Stunkel L, Newman-Toker DE, Newman NJ, Biousse V. Diagnostic Error of Neuro-ophthalmologic Conditions: State of the Science. Journal of Neuro-Ophthalmology. 2021;41(1):98-113. PMID: 32826712.

4. McClelland C, Van Stavern GP, Shepherd JB, Gordon M, Huecker J. Neuroimaging in patients referred to a neuro-ophthalmology service: the rates of appropriateness and concordance in interpretation. Ophthalmology. 2012;119(8):1701-1704. PMID: 22484117.

5. Frohman LP. The Human Resource Crisis in Neuro-ophthalmology. Journal of Neuro-Ophthalmology. 2008;28(3):231-234. PMID: 18769291.

6. Liu YA, Ko MW, Moss HE. Telemedicine for neuro-ophthalmology: challenges and opportunities. Current Opinion in Neurology. 2021;34(1):61-66. PMID: 33230033.