Contributing Factors and Consequences of Referral Delays in Uveal Melanoma: A Mixed Methods Study in Alberta, Canada

Abstract

Delays in uveal melanoma (UM) have profound impacts on patient outcomes including loss of vision, loss of the eye, and death from metastatic disease. In order to design strategies to facilitate timely referrals, we first need to elucidate factors that contribute to delays and the consequences that may come from a delayed referral. However, knowledge gaps remain in several pertinent areas surrounding UM referral delays, leaving the specific mechanisms that prevent timely referral unclear. The following is a collection of three studies that attempt to illuminate the context and implications of UM referral delays through a mixed methods approach. The aim of the first study, a retrospective cohort study, was to quantify the prevalence of delayed UM referrals and determine if these delays are associated with demographic or tumour variables. The observed prevalence of UM referral delays was 34% and delayed tumours were associated with size and PReferentially expressed Antigen in MElanoma (PRAME) expression. The aim of the second study, a cross-sectional study, was to describe the information included in referral letters to an ocular oncologist for suspected UM to determine how well these letters characterize the risk of the tumour to accurately triage patients. It was found that while patient demographic and contact details were generally well reported, risk factors associated with malignant transformation were often missing. The aim of the third study, a qualitative descriptive study, was to explore barriers and facilitators to efficient care along the UM referral pathway from the patient’s perspective. Four themes were identified that characterized the UM patient’s referral experience: a) how patients defined a “smooth” referral process, b) how patients’ personal circumstances affect access to care, c) how patients’ expectations of optometrists influence satisfaction with their care, and d) emotional distress during the referral process and the impact of timing. By examining the nature of UM referral delays through multiple angles, this thesis highlights the importance of provider competence at detecting and assessing the malignancy risk of lesions, clear and comprehensive communication through referral letters, and understanding real-world challenges experienced by patients in the UM referral pathway.