Challenges and Stakeholder Perspectives in the Referral Process for Suspected Uveal Melanoma: A Cross-Sectional Mixed Methods Study

Abstract

Uveal melanoma (UM) is a rare but deadly eye cancer with a survival rate of 45% within 15 years of diagnosis (1). This is likely due to a lack of early treatment, a key characteristic of positive cancer outcomes (2). In fact, the risk of death due to UM increases by 1% for every 10-day delay in treatment (2). We surveyed and interviewed three major stakeholder groups in the UM referral process – ocular oncologists, primary eye care providers, and UM patients – to determine existing barriers in care that delay treatment.
Ocular oncologists reported that many UM cases are referred too late, resulting in poor prognoses. They also identified a lack of information in referrals, leading to difficulties in triaging patients. Primary eye care providers lack confidence in differentiating between low- and high-risk lesions and are uncertain over where to send UM referrals. They stated that there is a lack of ocular oncologists needed to monitor suspicious lesions. Patients experienced initial misdiagnoses of their UM and described logistical barriers such as extensive travel and costly eye care that reduces accessibility of care. These challenges imply that there is a need for streamlining the UM referral process to achieve timely care.