Health seeking behaviour, delayed presentation and its impact among oral cancer patients in Pakistan: a retrospective qualitative study

BACKGROUND: Delayed diagnosis of Oral Cancer (OC) can mean a difference in quality and expectancy of life for the patient. This delay could be from the healthcare side, or more importantly from the patient’s side. Globally, there are studies enumerating the causes for delays from the patients’ side in seeking healthcare for Oral Cancer; however, no similar research is found in the context of Pakistan. This study endeavoured to understand the health seeking behaviour, reasons for delay in consultation and the impact on OC patients’ lives. METHODS: In-depth interviews were conducted with randomly selected OC patients at a private sector tertiary care facility in Islamabad (who met the inclusion criteria of having successfully been treated for Oral Cancer) which caters to the most diverse population for the treatment of Oral Cancer. Theoretical saturation was achieved at 14 interviews. All participants gave verbal consent for participation, which was recorded prior to the interviews. RESULTS: Patients (age range 43–68 years) had received the surgical treatment and radiation. The reported delay before seeking a proper medical advice ranged from 1 month to 2 years. Lack of awareness about OC risk factors, symptoms, and whom to approach for treatment were the main reasons. Most respondents relied on self-treatment considering the non-healing wound/ulcer to be a minor issue until they were advised a consultation with a specialist. Treatment started within 1–3 months after a confirmed diagnosis on biopsy. The reported average expenditure on treatment was US$5000-10,000, mostly covered through a private health insurance and others borrowed the money. CONCLUSION: A socio-behavioural change campaign for the general population can result in earlier presentation of the OC, minimizing the financial burden on the patient as well as the health system, and improving the quality of life of the patients.