Experiences from detection to diagnosis : lessons learned from patients with high-risk oral lesions
Creators: name: Biggar, Heather Caroline
Publisher: name: University of British Columbia
Year: 2009

description: Oral cancer is the 6th most common cancer in the world, with a poor prognosis and frequent late-stage diagnosis, which significantly impacts survival and quality of life. The key to better control of this disease is early detection, preferably at a precancerous stage. In order to facilitate this early detection and diagnosis, it is critical to identify the factors potentially impacting on the time lag from initial detection to diagnostic biopsy. The overall goal is to develop effective strategies for early identification of oral cancers in order to achieve better control over this disease. There are 2 components in this thesis: the objectives of part I (personal interview) were 1) to develop an interview-style questionnaire, 2) to collect data from patients with high-risk oral lesions (HRL’s) and 3) to characterize the experiences of these individuals that may have impacted the time interval leading up to diagnosis. The objectives of Part II (focus group discussion) were 1) to gather feedback regarding the questionnaire developed in Part I, 2) to obtain recommendations for future planning and delivery of province-wide questionnaire and 3) as a group, to share information on patients’ experiences to diagnosis and patients’ perspectives on their interactions with health professionals (HP’s) throughout this journey. An interview-style questionnaire was developed to collect both qualitative and quantitative data on patients’ experiences. Forty patients with HRL’s diagnosed within 12 months were recruited and interviewed in the Dysplasia Clinic of the BC Oral Cancer Prevention Program. Two focus groups were conducted and feedback from participants regarding the questionnaire and patients’ experiences was recorded. Among 40 patients interviewed, 21 (53%) initially self-identified their lesions (SIG) and 19 (47%) were identified by health professional screening (PSG; 84% by dental professionals). The SIG showed higher rates of invasive SCC at diagnosis as compared to those in the PSG (76% vs. 32%, P = 0.01) and SIG took twice as long to have the initial biopsy performed as the PSG (23 ± 52 vs. 11 ± 28 months). Notably, the main symptom of patients in SIG was pain or presence of non-healing ulcers (18/21; 86%). In contrast, all lesions in PSG were asymptomatic. The mean time from detection to diagnosis was 17.5 ± 42.3 months (range: 0-240 months). Fourteen patients (35%) experienced a time lag of greater than 6 months from first detection of an oral lesion until the first diagnostic biopsy was performed. Both patient and professional factors impact on the time lag. The main contributing factors for this time lag include both patient factors (a lack of concern, fear, and a lack of oral cancer awareness) and the professional factors (lack of knowledge in differentiating high-risk lesions, delay in initiating the referral or ‘watch and wait’, and delay in scheduling of referral appointments to the specialists). Focus group results supported the format and content of the questionnaire, provided input in designing of future province-wide survey and emphasized that patients require continued post-diagnostic and treatment care. A general lack of awareness of oral cancer in general population and in HP’s in addition to a lack of screening activities have been brought forward as critical factors that result in delay to diagnosis. In conclusion, these results suggest HP’s, especially dental professionals, can play a critical role in early identification of HRL’s at an asymptomatic, pre-invasive stage through regular screening. Strategies in raising awareness of oral cancer in both the general population and among HP’s are essential for early identification of oral cancers in order to achieve better control over this disease.