Hospital-based Oral Cancer Registry: A Promising Initiative and A Practical Networking Model

INTRODUCTION Cancer has become one of the ten leading causes of death in India. Around, 1.5–2 million cancer cases occur at any given point of time. Over 7 lakh new cases of cancer and 3 lakh deaths occur annually due to cancer. Nearly 15 lakh patients require facilities for diagnosis, treatment, and follow-up at a given time.[1] Five-year survival among head-and-neck cancer patients in developed countries ranged between 0.3% and 12.6%, whereas in developing country, it ranged between 1% and 4.7%. A study from Mumbai showed a 5 years’ survival range between 25% for cancer tongue and 74% for lip.[2] Oral cancer (OC) is the 16th most common cancer in the world with 3, 77,713 cases reported in the year 2020. Of these, 84% were from Asia and Europe.[3] It is the second most common cancer in India and this contributes to more than one-third (36%) of total OC incidence in the world.[4] The alarming statistics are not meant only for discussions, rather an indication for professionals to take initiatives and contribute in a meaningful way. One such initiative was hospital-based OC registry (HBOCR) at our outreach center with significant prevalence of tobacco consumption, oral potentially malignant disorders (OPMD), and OC. CONTEXT Cancer registries such as Global Cancer Observatory, surveillance, epidemiology and end results, hospital and ambulatory surgical treatment center-based registries, special registries provide prevalence information. They cover complete national populations or samples of such populations from various places. Cancer registries also provide cancer survival statistics. Many countries have mortality data by cause available due to important event registration. Cancer data are always collected and assembled after the events to which they pertain, hence the most recent statistics available are always “late.”[5] In India, the National Cancer Registry Programme (NCRP) was initiated in 1982 by the Indian Council of Medical Research (ICMR) to give a picture of magnitude and patterns of cancer. The National Centre for Disease Informatics and Research (NCDIR) under NCRP has contributed significantly in providing cancer statistics through the registries. The registries work at two levels: Population-based cancer registries (PBCRs) – takes sample population in a geographically defined area Hospital-based cancer registries (HBCRs) – takes the data from the patients coming to a particular health institution. These registries are basis for information on disease burden, planning interventions and assessment of effectiveness, trend analysis, comparisons, and source for further analytical studies and quality of care. The data transmission happens in a very systematic way from population to the NCDIR.[6] The analysis of the 28 PBCRs and 58 HBCRs reported on cancer mouth and tongue to be in the top five leading sites with 8.7% and 6% for males and 3.3% and 2.7% for females consecutively. The report also has predicted that there will be 694,367 cases of cancers in the sites associated with the tobacco use by 2025.[7] Subsequently from the same registries, the crude rate is estimated to be 100.4 per 100,000 and one in nine people to develop cancer in her or her life time.[8] The report also urges activities for early detection, risk reduction, and management. Up to 2016, lip and oral cavity cancer represented 7.2% of the total cancer cases registered. Lip and oral cavity cancer had the highest crude incidence and disability adjusted life years (DALYs) rates in the lower-middle epidemiological transition level state group.[9] In 2016, the top risk factors in the Global Burden of Diseases for lip and oral cavity cancer in India were smokeless tobacco, alcohol consumption and smoking, to which 332%, 298%, and 209% of lip and oral cavity cancer DALYs could be attributed, respectively.[9,10] Just like the stages of disease progression, PBCRs and HBCRs are only capturing the confirmed cases which will only give statistics of present number of cases with carcinoma or the mortality rate of cases due to OC. However, to initiate preventive and promotive actions as indicated by the ICMR report 2020,[11] one needs to capture a more detailed data on history of disease development starting by knowing the risk factors (exposure and onset of symptoms) and identify the pathological changes appearing OPMD. The rapid growth of population and diverse culture and traditions of various ethnic groups of the nation an alarming predictions of cancers related to tobacco use has been reported. However, the coverage of registries is limited, with 16.4% coverage of total population and 31.6% and 9.5% for urban and rural population respectively with no coverage of the rural population in most registries.[8] The registries have limited data on risk factors and precancerous conditions, which are important for curbing the menace of tobacco use. Recognizing the increasing trend and predictions of increasing tobacco-related cancers, there are recommendations to expand the cancer registrations to more representative populations.[7,8] Mouth and tongue cancer, often categorized as oral cancer (OC), is significantly linked to tobacco consumption. Dental professionals and organizations play a crucial role in raising awareness and implementing preventative measures due to the high association between tobacco use and this type of cancer. The mandatory requirement of establishing outreach centers by dental institutions from the Dental Council of India now appears to be a mode for contributing in OC statistics. Hence, it is imperative for the dental academic institutions to take voluntary measures in recording the data for OC, OPMD, and risk factors, and contribute to the national data bases for larger good. INITIATIVE With this background, the faculty of dental sciences (FDS), established a HBOCR in 2014 with an objective to record OC and OPMD cases visiting rural dental unit diagnosed under opportunistic screening. The data so captured would contribute in cessation initiatives and also referrals. After certain time with growing body of knowledge and technological advances, we realized that the data captured in the registry was not completely in alignment to the national and international guidelines and recommendations. Hence, the registry was updated with additional variables such as habit history which is subcategorized into forms and patterns of tobacco and alcohol consumption, diet history is added to specifically elicit the type of food to analyze if the diet is cancer promoting or preventing. The form was validated by experts and user manual was developed to facilitate standardization and training. The dental surgeons at rural dental unit were trained by the experts for accurate identification of the lesions and documentation of the appropriate characteristics of the lesions. Leveraging on the compulsory internship in rural settings, the interns were utilized for collecting data from patients who were at risk, diagnosed with OPMD and OC after appropriate training. The data accuracy was verified at two levels; dental surgeons and the faculty in the department. When in doubt, a clinical images would be shared with the experts in department of OMDR for confirmation. The postgraduates would contribute in ensuring data digitalization and data analytics. OUTCOMES Descriptive statistics of the data from registered cases in hospital-based oral cancer registry An analysis was performed for the cases registered in HBOCR from 2014 to December 2022 and represented in terms of time, place, and person. The analysis described the percentage of OPMD and OC with respect to age, gender, geographic distribution and yearly trends. Figure 1 depicts - The mean age of the subjects registered in the HBOCR was 54.53 ± 14.04; with the range of 19–95 years. Among the 168 cases (refer Table 1 for details of cases reported), 103 (61.3%) were female and 65 (38.7%) were male; out of which 53 (31.5%) consumed smoked form of tobacco; 111 (66%) consumed smokeless form of tobacco and 04 (2.3%) consumed both forms of tobacco. Figure 2 represents the distribution of lesions of the reported cases. Four lesions were present on C00 – lips (2.4%); 02 on C01 – base of tongue (1.2%); 5 lesions on C02 – other parts of the tongue (3.0%); 11 on C03 – gums (6.5%); 5 lesions on C04 – floor of mouth (3.0%); 10 lesions on C05 – palate (6.0%); 126 lesions on C06 – mucosa (75.0%); 3 on C07 – vestibule of the mouth (1.8%); and 2 premalignant lesions (CX) were recorded (1.2%).Figure 1: Age wise distribution of cases. Source: The image is from Shutterstock photosTable 1: Details of cases reported in the hospital-based oral cancer registryFigure 2: Clinical findings of the lesion on intraoral examination. Source: The image is from Shutterstock photosFigure 3 depicts the distribution of cases year wise from 2014 to December 2022. There was a rise in number of cases in 2015 and with a downfall in 2016–17. During 2021, there has been a sudden rise in registration this might be due to outbreak of COVID-19 pandemic which might have led to less registration of cases during 2020 and hence a sudden leap in 2021 and steady increase in 2022.Figure 3: Trend analysis of cases reported in hospital-based oral cancer registry from 2014 to 2022. Source: The image is from Shutterstock photosBasis for analytical studies The data reported in the register not only gave descriptive analysis but provided ground for conducting a case–control study [Table 2] at the same peripheral location (the complete report of this study is under consideration for publication elsewhere)..Table 2: Results of case–control studyAction taken based on the data from hospital-based oral cancer registry Health education at community level was planned based on specific risk factors prevailing in the community. For example, consumption of raw tobacco with betel quid was a common behavior. Hence, the content of the health education predominantly revolved around the hazards of raw tobacco and areca nut. This further led us into exploring the source of raw tobacco, which was a local weekly market and petty shops within the village. Hence, an advocacy efforts were initiated by submitting the data to local health authorities for action. The existing community-based learning program was utilized for creating awareness amongst the communities. The patients identified for OPMDs and OC were referred to FDS, RUAS, or KIDWAI Memorial Institute of Oncology for further diagnosis and treatment. Drafting of technical report and submission to heath authorities Recognizing limitations in COTPA 2003, a technical report was submitted to health authorities in the department of health and family welfare at district and state level. This report contained details on easy availability of raw tobacco in the local market at most affordable rates by a common people including statistics from HBOCR and case–control studies. Establishing baseline data for estimating prevalence of oral cancer and oral potentially malignant disorders and ascertainment of risk factors Further, it was planned to establish base line data on prevalence of risk factors, OPMD and OC for the 22 villages within the administration of Kaiwara Hobli (Figure 4 depicts geographical distribution of cases coming to our centre from around Kaiwara hobli). An initial pilot study results from three villages demonstrated 12% of the population with OPMD and 32% of the population with habit of consuming smokeless form of tobacco. The result also revealed the lowest age with risky behavior as 6 years.Figure 4: Geographic distribution of cases. Source: The image is from Shutterstock photosTHE NEED FOR ESTABLISHING HOSPITAL-BASED ORAL CANCER REGISTRY AS PER INDIAN SCENARIO Hospital-based cancer registry (HBCR) as a part of NCRP and has been established in 58 centers in the country. OC registration is normally part of HBCR and there are possibilities for missing case registration. In this context, asking oneself; is there a need for separate HBOCR? This needs a thorough and diligent introspection and analysis of the existing system by dental professionals and all relevant stake holders. Although most of the dental institutions and dental establishments at all levels do encounter OC cases most of it goes unregistered or unreported. Advances made in the prevention, screening, and treatment has prolonged the life span of patients of cancer. Data on risk factors, OPMD and new cases of OC, deaths, geographical distribution and quality of life are needed to enforce planning, monitoring, and evaluation of OC prevention and control efforts. Thus, HBOCR can be a promising initiative to capture details, plan interventions and also share data with the NCDIR. Many oral malignancies manifest at an advanced stage of the disease. According to studies on delay, patients typically delay seeking professional assistance for up to 3 months after becoming aware of any oral symptom that could be related to OC. Despite public education, the proportion of patients presenting with advanced disease had not changed in 40 years. When blame is assigned to the patient or the physician, it is usually due to the patient’s delay.[12] This delay may be longer in younger patients since primary care practitioners do not suspect malignancy, which is true for OC scenario. We sincerely urge all stakeholders primarily the dental institutions and dental establishments for the proactive role that they need to take up in documenting risky behavior, OPMD and OC cases and contribute in reducing the disease burden. RECOMMENDATION Considering the possible areas where a patient with OPMD or OC is encountered and being mindful of the existing national database, we propose a model to register OC, OPMD, and risk factor [Figure 5].Figure 5: Practical networking model for hospital-based oral cancer registry. Source: The image is from Shutterstock photos. OPMDs: Oral potentially malignant disorders, HBOCR: Hospital based oral cancer registry, HBCR: Hospital based cancer registry, NCDIR: National Centre for Disease Informatics and Research, NCRP: National Cancer Registry ProgrammeThis model has tried to consider all the sources, where patients with OC, OPMDs and “at risk” reports and with the scope for opportunistic identification. This model proposes networking of dental clinics in the rural area with outreach centers of dental institutions and to NCDIR. This can be replicated by all 324 dental colleges across the country and contribute to the missing data from the rural population as identified by Krishnan et al.[8] Inclusion of recording Aadhar card details can help in easy identification of the cases along with the removal of the duplicates and for later follow-ups. This model contributes to robustness of the data and also in predicting and analyzing the stage of disease progression which is more realistic than prediction models.[8] We will also be able to identify the trends at local and regional level and plan region-specific interventions. It can also be a source for conducting relevant contextual research.CONCLUSION The HBOCR appeared to be a promising initiative to capture data on risk factors, OPMD and OC. The analysis revealed the increasing number of OPMD (138) and OC (30) and risky behavior (32%) among the residents of Chikkaballapur District. HBOCR is an important database for OC in India. Lack of standardization, communication related to HBOCR among the stakeholders results in “missed cases” contributing to biased statistics. One might not visit the registered tertiary care hospitals or any other hospitals which are not linked with national database that is either population-based or hospital-based registries. These OC registries can be an extraordinary source to NCDIR for analyzing trends and risk factors and planning interventions. We also emphasize on the need for registering OPMDs and details of risk factors to address the convention on the statistics, as OC are always “late.” The networking of registries in dental establishments including OPMD, risk factors, and OC will go a long way. This networking with each and every dental establishment will contribute in robustness of the database. The need of the hour is the standardized format, technology and most importantly a positive mindset. Our agenda should now be actions oriented toward “sloping of the curve” for OC that aligns with SDG 3 and other international declarations which has been ratified by our nation.