Introduction: Ocular Surface Squamous Neoplasia (OSSN) is the most common adult malignant ocular neoplasm in Malawi and its incidence is known to be on the rise in Africa. Reasons for delayed presentation in patients having advanced disease have not been described in Malawi. We did a study to determine health care seeking behaviour characteristics of patients presenting with advanced ocular surface squamous neoplasia at Queen Elizabeth Central Hospital in Blantyre, Malawi.

Methods: This was a descriptive cross sectional study in which patients with stage T3-4d disease were recruited into the study. Interviews with patients were conducted and collected data was entered on Epi data and analysed using Microsoft excel.

Results: A total of 81 patients were recruited in this study and of these, 53% were females. Mean age was 37.4 (±9.8 SD) years and 65.4% of patients were married. Eighty-nine percent of study patients sought health care at least one month after noticing tumour in the eye. Reasons for presenting later than a month after noticing the tumour included low suspicion of cancer (52.5%) and transport challenges (29.6%). Majority (77%) of patients in the study had no prior knowledge of the disease and lack of awareness on availability of treatment services for ocular surface squamous neoplasia was reported in 83% of all patients. Only 19% of the patients in this study regarded their eye disease as life threatening.

Conclusion: Majority of patients made their first contact with health facilities after a month of having noticed the tumour on the eye. Lack of awareness of the disease and availability of its treatment was found in OSSN patients. We recommend programmes aimed at increasing public awareness of the disease and its treatment.