Factors influencing delayed presentation of periorbital carcinoma requiring orbital exenteration

Abstract

Background: Ocular surface squamous neoplasia is the most widespread indication for orbital exenteration and the presenting feature of human immunodeficiency virus (HIV) in 50% to 86% of patients in endemic areas. Overall survival at 1 year post-exenteration ranged from 69.1% to 97.0%, according to a review article, with the lower rate attributed to delayed referral.

Methods: A qualitative, descriptive phenomenological study was conducted to identify factors responsible for delayed presentation in advanced periorbital carcinoma requiring orbital exenteration. A total of 25 participants were enrolled using convenience sampling. Data were collected by means of a structured questionnaire and open-ended questions. The questionnaire was conducted as a semi-structured interview and recorded with a voice recorder, and the interviews were coded and themes were identified. Data were analysed using Colaizzi’s seven steps for thematic analysis.

Results: Six major themes were identified: a disregard for the seriousness of the condition; financial constraints; delays caused by the clinic; alternative treatment sought; stigma and fear; and relief and hope.

Conclusion: Participants acknowledged that the mass was ignored. However, once healthcare was sought, many felt treatment was delayed as they had to wait for results or because of delayed appointment dates. A lack of financial freedom and a fear of loss of income further delayed participants. Traditional healers were sought as an adjunct to allopathic medicine to appease family. Stigma surrounding the loss of an eye burdened and alienated participants, but many were able to look to the future and forge a new hope and identity.

Contribution: This study contributes to our understanding of the patient-related and systemic factors leading to delay. It highlights key barriers and and promotes earlier diagnosis and intervention.