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UBC Theses and Dissertations

Barriers and facilitators for an oral cancer screening program in a high-risk community in the Downtown Eastside of Vancouver Currie, Brenda Lee

Abstract

Oral squamous cell carcinoma (SCC) is the 6th most common cancer in the world and is believed to progress through sequential stages of pre-malignancies. It is a deadly disease combining both high mortality (5-year survival rate of just over 50%) and morbidity, largely due to late diagnosis. Multiple factors contribute to this late diagnosis, including problems in both clinical and histological identification of high-risk oral pre-malignant lesions (OPLs) and early SCC and difficulties in reaching some of the high-risk populations, notably the marginalized poor. The BC Oral Cancer Prevention Program (BC OCPP), a leading research team in the study of early high-risk oral lesions, has developed a number of molecular, histological and clinical tools to help identify high-risk OPLs and early SCC. However, research to date has been confined to high-risk dysplasia clinics. There is an urgent need to expand this research into the community for two reasons: first, tools developed in the high-risk clinics need to be validated in community settings; and second, we need to find ways to reach high-risk populations, who frequently do not access medical/dental care. This thesis focuses on the expansion of BCOCPP research into communities and involves two phases. The objectives of the Phase I were: (1) to establish an oral cancer screening clinic in the Vancouver Downtown Eastside (DTES), where a high concentration of the marginalized poor reside; (2) to determine characteristics of persons attending the clinic as compared to the broader community; (3) to determine the frequency and pattern of oral diseases in patients in the clinic; and (4) to identify potential challenges to screening in the clinic. In the Phase I, an oral cancer screening service was established in the existing Portland Community Dental Clinic (which provides dental services with free or reduced rate for the marginalized poor in the area, approximately 3500 people). The approaches and tools used to screening included: (1) questionnaires, (2) conventional oral and head and neck examinations, (3) the use of visual tools (toluidine blue staining and fluorescence visualization device), with (4) biopsy and follow-up whenever required. A total of 200 dental patients were screened over a 2-year period. The results showed the following: (1) patients were characterized by the presence of high-risk attributes including lifestyle (86% were smokers, 83% were drinkers and most were drug users), compromised immunity (30%> with hepatitis, 27% with diabetes, and 12% HIV infection) and low-income, with associated poor nutrition and limited access to care; (2) disease (oral cancer) prevalence was high in this group, with 2 SCC found in the 200 patients compared to 1/10,000 in the general population (in addition, 8 dysplasia and 2 atypia were found); and (3) most DTES residents did not attend the clinic during the study period, identified as a significant challenge to screening in this community. Based on the findings and challenges from phase I, the objectives of the phase II were (1) to characterize the knowledge and beliefs about oral cancer and the attitudes towards oral cancer screening in this community, (2) to identify the barriers and facilitators for an oral cancer screening intervention, (3) to provide a basis for development of strategies for the implementation of an oral cancer-screening program in this high-risk, hard-to-reach community. This was carried out through focus group discussions (questionnaires and open-ended questions) in the DTES to assess the participants' knowledge of oral cancer, feelings of susceptibility to developing oral cancer, and perceived barriers and facilitators to oral cancer screening. All conversations were audio recorded and transcribed verbatim. Major themes were identified from the narrative data and analyzed accordingly. Six focus group discussions were completed during the course of a six month period. A total of 38 individuals participated in the focus group discussions. The results showed that participants demonstrated a lack of awareness and knowledge about oral cancer and a lack of feeling of vulnerability for developing the disease. They were not aware of what oral cancer is nor were they aware of the early signs of the disease. Most were unaware of the risk factors, especially the association of alcohol with oral cancer. Participants said they would be willing to attend regular oral cancer screenings if they were free, accessible, painless and quick and if they were offered incentives for participating. In addition, they indicated their need and desire for education about oral cancer, especially the early signs of disease and its risk factors. Results from these two studies highlight the need for improving oral health in this high-risk population by enabling access for all to an oral cancer-screening program and the importance of focusing on educating high-risk communities about oral cancer. To maximize results and positive health behavior change, the promotion of tobacco and alcohol cessation should be encouraged. Results from this study will provide the basis for planning strategies and approaches for the development of an effective, sustainable community oral cancer-screening program in this high-risk population.

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